Hey all!
I wish I could have participated live in this one, since it relates directly to my last post! I have some decisions to make about new medication. Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?
Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids. Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).
Q2 – Some have answered, but There are 13 FDA approved treatments now.
Which treatment(s) caused the worst side effects for you?
I had absolutely none on Gilenya. I really loved Gilenya. I hope I can get back on it. Worse was Solu Medrol.
Q3 – What would you say your worst side effect was? How did you get past it?
Just... had to breathe through it. I thought I had no choice. Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.
Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?
Yes. First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea. I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no. I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.
Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?
Nah, none here.
Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?
Yup. Was pretty much told that any side effects I experienced...well, it's just the way it is. I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.
Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?
I hope this is true. Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!
Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?
Do your research... you can trust your neuro, but also trust your gut. If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!
Love all, MSloan
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Monday, April 4, 2016
Monday, March 14, 2016
ChatMS, 3/14/2016
Alright, peeps! Time for another installment of post-hours ChatMS!
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
I missed the chat again - had to do laundry and my poor kitty is sick, not to mention dinner. Spending a lot of "spoons" tonight. Looks like this was a good one! Don't forget to copy/paste the questions to your own blog!
Q1: Has your social life changed since being diagnosed? If so, in what ways?
Yes and no - there are some things that have been altered simply because I can't be as active as I would like to be. However, I wouldn't say this has been true since I've 'been diagnosed,' so much as since I became symptomatic. I have been reducing my overall activity and watching what I put into my body since early 2010, always wary of nausea and getting 'the shakes.'
Q2: Who do you tell you have MS? Close friends/family? Anyone and everyone?
I didn't tell many people for two years. I have recently 'come out' on my facebook page, but to be honest with you I don't think most of my friends really understand why I have been very vocal about MS awareness this month. They don't understand it and they never will. The first person I told I was concerned I had MS was my husband, about four months before I was diagnosed, and then I shared my concerns with one of my oldest friends two days before diagnosis. Mixed reactions from everyone I told. I now only share it with patients when they really need to not feel alone in their own invisible struggles - we're kind of a 'special club' that, from the outside, seems very exclusive.
Q3: How long after meeting someone do you tell them you have MS?
As a general rule, I don't tell people right away. This is because of the negative stuff associated with telling anyone that you are chronically ill - they assume you're telling them to get attention, not to get them to better understand why you do things a certain way. It's just not worth the hassle. I suffered from "pregnancy brain" very early on in my pregnancy....but it wasn't pregnancy brain at all. It was MS brain. And it's not worth the fight to get people to actually care why you might be struggling.
I waited at least three months to tell my current coworkers. I don't wait at church. To me, church is off the table. If you are going to judge me at church, you shouldn't be at church!
Q4: How do you tell people? When the time is right? Or it just comes out in conversation?
I do both - when the time is 'right,' and when it makes sense in the context of the conversation. I don't just blab about it. Again, seems like an attention getting thing - and you get negative attention for something like this, no positive. People pity you, they don't want to understand you. As I have said time and time again, it makes them uncomfortable, so it's not worth the hassle. I have told patients who also have MS, patients who have Fibro, Lyme, or Lupus, and anyone who has 'invisible symptoms' and are struggling - I have another patient who I really have gotten close with, he has muscular dystrophy.
Q5: Are there times you're ever hesitant to tell people you have MS?
Abso-freaking-lutely. In a professional context, this is a HUGE no-no. I don't want my colleagues in audiology to know about my MS because it can seriously impact my employability. I'm an ADA risk. Is it incredibly illegal, unfair, and terrible that I would worry about such a thing? Yes. But I still have seen discrimination - when I was first diagnosed, I was honest with a potential employer about my very real, very current struggle, because I had been advised not to fly. They took my interview and I heard not another word. It was very painful, but I learned a very hard and valuable lesson. Hence why I waited 3 months to tell current coworkers - and I still don't think I'm safe here, because I know someone was let go for having Parkinson's just before I was hired.
It's shitty, and I hope this changes.
Q6: Did you meet your significant other before or after being diagnosed?
Long before. We had just gotten married when I started having symptoms - it was the hardest year of our relationship, for a number of reasons. My emotional state really set things off, I think; I was struggling with losing a very important friendship, with applying to graduate school, with my family being disappointed in my life choices. It was a hard year. And then... I got sick.
He's been fantastic, though when I first told him what I thought was going on, a few months prior to Dx, he was skeptical. When it really got serious, he was convinced I had a brain tumor - MS was the milder of the two!
Q7: Do you think having MS decreases your chance of finding a life partner?
I can't comment on this because of my answer to Q6, but why the hell should it?!
Q8: Do people treat you differently after hearing about your disease?
Yup.
Negatively. Awkwardly. Skeptically. And it really is painful and lonely to know that the people that you thought cared couldn't give half a shit to try and understand what you're experiencing.
Q9: Do you find that most people are understanding when you need to reschedule plans?
Eh. I kinda have a reputation as a flake.
Q10: Does MS hold you back from living a full life?
Hell no!! As I always say, "I have my MS, it does not have ME," and if I want to have a full life, that's my choice and it can't stop me!
I mean, it can really, really try, but I won't let that happen!
Love to all, I really liked this one!! I look forward to seeing other responses :)
MSloan
Monday, January 18, 2016
ChatMS 1/18/2016
Hello all!
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
Monday, November 9, 2015
Chat MS - 11/09/2015
This week's Chat MS dealt with weight gain; I missed the live chat, but hopefully this keeps it going!
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
If we don't talk about it, progress has no chance! Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.
I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this. I will do the best I can to stay relevant with these answers!
Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?
I was fortunate in that it didn't give me weight gain, at least not a noticeable amount. Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.
Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?
What kept me from being active the most was not fatigue, though that definitely played a part. When I exercised, my numbness got worse. I couldn't feel my legs - at all. I felt very unstable. It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.
Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?
Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste. Yuck!
Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?
No comment here -
Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?
I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms. My MS hugs were nauseating and debilitating. They would come in waves throughout the day. I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.' I had odd lower-right pain that felt like an ovarian cyst - but no cyst. It was very painful. Appendix was fine. Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins. Who knew?
Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?
I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided. It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch. You can end up giving yourself a problem you don't already have, so be careful! But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.
Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?
My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with. Your body is trying to heal. If your body gains weight after steroid treatment, the swelling will go down. Don't panic, and definitely don't overwork yourself. Save your spoons, so to speak, and listen to what your body says!
That's all, folks! Love to all -
MSloan
Saturday, October 31, 2015
Baby Blanket
I started a baby blanket last night! Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down! I had just enough energy to take my prenatal and crawl into bed.
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Monday, October 26, 2015
ChatMS - 10/26/2015
Tonight's ChatMS was all about intimacy. I appreciate all of your support and participation, feel free to comment or copy/paste for your own blogs!
....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy?
I'm married and generally very open. I rate at a 5!
Q2: Many people have different definitions of intimacy. What does it mean to you?
Intimacy to me means the ability to open up to a person in more than a casual or surface manner. It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart. It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.
Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?
Yes - a few. I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it. I had some more sexual dysfunctions as well, which I will address in later questions.
Q4: Have you and your partner discussed how MS can affect Intimacy?
Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship. We had to really buckle down and decide if we wanted to have children. It meant I had to breach the subject with a few friends - and I mean few. Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.
Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this?
Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex. I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.
Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?
The biggest one was an effect on my orgasms. For me, a climax affects my entire body - it isn't just localized in one 'place.' Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience. When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it. I was terrified that it would ruin our intimate time together forever. Thankfully, that ended. Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.
Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?
Just like anything in a relationship, communication is key. I have to be honest with my husband about do and do not feel ready for. I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants. It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.
It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else. Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!
Keep the conversation going! Participate weekly in #ChatMS on Twitter and FB!
MSloan
....
Q1: On a scale of 1 to 5, how comfortable do you feel talking about Intimacy?
I'm married and generally very open. I rate at a 5!
Q2: Many people have different definitions of intimacy. What does it mean to you?
Intimacy to me means the ability to open up to a person in more than a casual or surface manner. It is not always sexual or romantic; I have few intimate relationships in my life, I am an open person but I am not easily trusting after one of my most precious relationships fell apart. It has new meaning to me now, especially in regards to MS, because it can and will impact every single relationship one has.
Q3: MS can have effects on Intimacy. Have you noticed changes since your diagnosis?
Yes - a few. I wrote a blog post about this earlier last week; it's difficult to feel welcomed to discuss my MS by people at work or church because they don't understand it. I had some more sexual dysfunctions as well, which I will address in later questions.
Q4: Have you and your partner discussed how MS can affect Intimacy?
Yes - we have had to have tough conversations about what this means for me, and how things might change in our relationship. We had to really buckle down and decide if we wanted to have children. It meant I had to breach the subject with a few friends - and I mean few. Many of the people I consider to be 'friends' still don't know I have MS - not that it matters, but I feel it's an important part of understanding why I make certain decisions.
Q5: MSers have more problems with ‘sex’ than a person who doesn’t have MS. Do you struggle with this?
Yes and no - I noticed a big drop in my libido shortly after being diagnosed, and when you are numb in areas from the waist down, it absolutely affects your ability to enjoy sex. I was depressed and very tired - it never felt like a good time, and this came right after a period where my libido was at an all-time high and our sex life was excellent; it was quite a setback.
Q6: ONLY if you are comfortable, what MS related symptoms have you noticed during times of physical intimacy?
The biggest one was an effect on my orgasms. For me, a climax affects my entire body - it isn't just localized in one 'place.' Instead, I can feel contraction and blood rushing all through my legs and torso, which enhances the experience. When I couldn't feel my leg or part of me pelvis, it really impacted my libido and my ability to enjoy sex when we had it. I was terrified that it would ruin our intimate time together forever. Thankfully, that ended. Now the only thing affecting our sex life is the weird experience of pregnancy.
I swear, I need to write a book - Pregnancy Sex: The Final Frontier.
Q7: How do you deal with the symptoms of MS and Intimacy? Have you talked to your neuro about it?
Just like anything in a relationship, communication is key. I have to be honest with my husband about do and do not feel ready for. I didn't discuss my sex drive with my neurologist then, but she was very perceptive and put me on anti-depressants. It was a lifesaver, though my Lexapro negatively impacted my climaxes as well for a while.
It's so refreshing to know that this is not an isolated problem, especially because it is likely addressed by some physicians as being a side effect of depression and nothing else. Don't let what your physician tells you be the only thing you learn - do research, ask others, be accountable for your healthcare!
Keep the conversation going! Participate weekly in #ChatMS on Twitter and FB!
MSloan
Thursday, October 22, 2015
And it goes around and around and around -
Well, I have an MRI scheduled for Saturday morning, bright and early.
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.
That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.
I am not gaining enough weight for my pregnancy. I know I am very stressed out, and I am worried about what that might do to the baby. I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.
Le sigh. But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!
I did a lot of reading today on what drugs might be viable during pregnancy. I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to. I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse. I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.
For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal." WOW. What a freakin' word. Definitely not doing that one while I'm pregnant.
I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday. Keep your fingers crossed that I'm wrong and the MS is still sleeping!
MSloan
Sunday, April 27, 2014
Picking Poison Again
Well, saw the neurologist on Friday. Or, the PA rather, who is very nice. Though it seems to be a running theme that people either never meet their doctor, or their doctor doesn't care - this is very frustrating.
I felt like they forgot why I was there. The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week. Then, we were going to re-do the MRIs, and start Tysabri. When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.
So we are back to the drawing board.
The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly. Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated. This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me. It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position. I have a stiff neck, but never had that before the last round of steroids.
This tells me that the likelihood of my failing the second round of steroids? Might be pretty high. I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it. I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.
They are going to start me on Gilenya for the time being because I'm about to move out of state. I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move. Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU. Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.
Again, sorry that this sucks for you. But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress. ::sarcastic thumbs up::
I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to. She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab. I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin. I'm so happy that she didn't give me the ridiculous pity look. If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.
That's it for now. Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated. Will have to hope my insurance will accept another round of MRIs. And I'm not bringing mom to another appointment - I just can't right now. Love to all.
I felt like they forgot why I was there. The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week. Then, we were going to re-do the MRIs, and start Tysabri. When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.
So we are back to the drawing board.
The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly. Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated. This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me. It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position. I have a stiff neck, but never had that before the last round of steroids.
This tells me that the likelihood of my failing the second round of steroids? Might be pretty high. I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it. I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.
They are going to start me on Gilenya for the time being because I'm about to move out of state. I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move. Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU. Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.
Again, sorry that this sucks for you. But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress. ::sarcastic thumbs up::
I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to. She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab. I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin. I'm so happy that she didn't give me the ridiculous pity look. If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.
That's it for now. Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated. Will have to hope my insurance will accept another round of MRIs. And I'm not bringing mom to another appointment - I just can't right now. Love to all.
Thursday, April 24, 2014
Qualifications
Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.
Oy, one big, fat, OY!!!
I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'
Any thoughts? Sorry for the short post, I will have more details tomorrow.
Love all - -
Oy, one big, fat, OY!!!
I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'
Any thoughts? Sorry for the short post, I will have more details tomorrow.
Love all - -
Tuesday, April 15, 2014
Short Circuit
The unknown is the scariest part of this process. When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread. Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.
Today the sensation is just... well, numbing. An absolutely constant tingle in the legs that is distracting. It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same. Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.
It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure. I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment. But nevertheless, it is embarrassing, and it didn't put my day off at a good start. Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out. Just a bummer in general.
With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better. I have to put faith in these steroids, but at the same time, I am not so sure. If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?
I wish I got the medical bill in the mail already. All this waiting is driving me nuts. I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?
Today the sensation is just... well, numbing. An absolutely constant tingle in the legs that is distracting. It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same. Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.
It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure. I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment. But nevertheless, it is embarrassing, and it didn't put my day off at a good start. Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out. Just a bummer in general.
With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better. I have to put faith in these steroids, but at the same time, I am not so sure. If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?
I wish I got the medical bill in the mail already. All this waiting is driving me nuts. I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?
Thursday, April 10, 2014
Just Keep Swimming
Okay, today I am trying to have a better attitude.
Let's face it, the last few weeks have been one big, bad, crapfest. We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction. I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.
So, where do we go from here?
Well, you have choices. You can choose to let your MS take over, and resign yourself to your symptoms and experience. But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now. So I don't have that option. I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.
But I refuse to be disabled by my MS. Until it takes my legs, I will NOT be disabled! I choose to not let this take over me just yet. I choose to have control. I choose to move forward!
So, this means, I choose to make a list of things to do while at my infusion appointments. I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision. I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.
Today I forced myself to make a choice to think positively. I may feel differently on Monday after three days of Solumedrol. But today, I will conquer!
- Margo
Let's face it, the last few weeks have been one big, bad, crapfest. We're trying to see the light at the end of the tunnel, but right now we wouldn't be surprised if that light ended up being a train headed straight in our direction. I keep having to move things around for work to get these treatments in, and we're just beginning this second round of steroids.
So, where do we go from here?
Well, you have choices. You can choose to let your MS take over, and resign yourself to your symptoms and experience. But I feel like I can't do that right now, because as interesting as it is to have a huge white spot show up on my MRI (see picture on blog web page at right), I am not having 'worsened symptoms' right now. So I don't have that option. I could also choose to let this scare me into not taking my California job, letting it interfere with my future, and let the fear disable me.
But I refuse to be disabled by my MS. Until it takes my legs, I will NOT be disabled! I choose to not let this take over me just yet. I choose to have control. I choose to move forward!
So, this means, I choose to make a list of things to do while at my infusion appointments. I choose to keep looking for an apartment in California, and I choose to make plans to go out and make a decision. I choose to not be afraid of the next two months, and I choose to have faith that I will be able to get financial help for all of the floodgates that are about to open on my little family.
Today I forced myself to make a choice to think positively. I may feel differently on Monday after three days of Solumedrol. But today, I will conquer!
- Margo
Wednesday, April 2, 2014
The Swing of Things
In July, my husband and I bought 20 passes to the local rec center to work out. We are not big workout people, by any means. I am a fairly skinny person, so cardio work just makes me feel even more small - I try some weight training, but let's face it, I'm much more of a yoga person anyway. My husband, on the other hand, is a bit larger (no thanks to my cooking) and has things like diabetes running in his family, so the need is much greater for him to make the effort. He is a naturally stocky person, so he bulks up like a Viking quite nicely when he puts in a little time - win/win, right?
Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist. I am NOT a jock. I was beat up by jocks. So working out is pretty much the last thing on my list. My husband didn't go all summer, and he was home every day (he works in the school systems).
Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary. I am broke broke broke broke broke. Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare. So yes, the stress is taking a toll, and my legs feel really 'springy.' It was a bad day for the shakes, and my heartburn was acting up. I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn. So, BLEH.
But, nevertheless, my husband and I went to the gym tonight. I ran. I ran and ran. My legs went totally numb and I still ran. I stretched my very tight muscles, but kept going. I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point. I haven't worked out in so long. And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.
Tomorrow, I'll be in a lot of pain, and I'm guzzling water. But tomorrow, I'll be in pain that I can control. It's a good feeling.
:)
Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist. I am NOT a jock. I was beat up by jocks. So working out is pretty much the last thing on my list. My husband didn't go all summer, and he was home every day (he works in the school systems).
Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary. I am broke broke broke broke broke. Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare. So yes, the stress is taking a toll, and my legs feel really 'springy.' It was a bad day for the shakes, and my heartburn was acting up. I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn. So, BLEH.
But, nevertheless, my husband and I went to the gym tonight. I ran. I ran and ran. My legs went totally numb and I still ran. I stretched my very tight muscles, but kept going. I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point. I haven't worked out in so long. And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.
Tomorrow, I'll be in a lot of pain, and I'm guzzling water. But tomorrow, I'll be in pain that I can control. It's a good feeling.
:)
Tuesday, March 25, 2014
Pick Your Poison
Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
What are they? Well, it helps me to write things down, so let's go through them! ::plays corny music::
Let's begin by discussing what treatments really are. There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.' Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again. As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise. That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.' What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions! :)
But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU. It can make you more susceptible to other infections, diseases, etc. Some cause stomach issues. Some are pills, some are injections or infusions. Some cause major birth defects. All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form.
It's a game of 'which is worse, the medication, or your MS?'
1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag. Clearly a ploy to make the product more interesting, but let's take a look.
This treatment is a pill version, taken twice a day. Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.
Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo. I feel for the placebo patients. It apparently also delays 'physical disability progression.' Well FAN-TAS-TIC. I LOVE reading about how my body could slowly deteriorate with this disease. Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands? Yeah, this is not terrifying AT ALL.
Slows development of brain lesions. Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month. Guess I'll have to wait for that next year, Tecfidera!
All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain). This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies. Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.
2) Tysabri
Oo, another totally unpronounceable drug. NIIIICE. OOO again, a sleeve with lots of little brochures tucked inside. This doesn't look tedious to read at all. I am already excited.
Tysabri is immediately different because it is a monthly infusion. What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour. Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do). But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless. Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat. Has a better rate of less relapses compared to the other drug so far.
This one has the same thing about reducing the timeline for physical disability. Love reading about that every time. But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see. Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly. I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either. I say - PASS!
3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS. I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.
Now, let's examing Gilenya. It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems. WHOA. Sounds like a much bigger problem than my legs being numb, doesn't it? But really, what idiot takes a pill then forgets to 2 straight weeks? You don't 'forget' that crap. Really, you do that on purpose or something. But I take The Pill, so I am used to a daily dose.
Yeah... all the side effects about this one are all about the heart. No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy. Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop. FAN-TAS-TIC.
This one includes information about how an insurance company might cover it. Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen. Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive. Should check eyes before taking this drug (which I need to do anyway). Also may 'harm your unborn baby.' Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth. So we'll see how that goes.
Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck! I'm going to bed. I'll decide tomorrow.
Love, Margo
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