Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were! (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank...
I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Monday, February 22, 2016
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
Tuesday, March 10, 2015
Gilenya Lookout -
Glad I read this - I'm on Gilenya and couldn't take Tysabri because I'm positive for JC. We'll see what comes of this!
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
Sunday, April 13, 2014
Lhermitte's Sign
Cool! Being a scientist can make some of the more interesting parts of MS exciting, despite how disconcerting it can feel.
Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck. I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis. I wasn't sure I would ever feel it, as many MS patients never do. So it was surprising today to say the least!
I was at the infusion center for my last dose of Solumedrol. The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part. But that's irrelevant to this post, back to the sign!
I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in. Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest. It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck. When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down. I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region. SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.
Have you ever had an interesting experience with a 'typical' ms symptom? Did you know what it was the first time you felt it?
- Margo
Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck. I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis. I wasn't sure I would ever feel it, as many MS patients never do. So it was surprising today to say the least!
I was at the infusion center for my last dose of Solumedrol. The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part. But that's irrelevant to this post, back to the sign!
I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in. Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest. It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck. When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down. I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region. SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.
Have you ever had an interesting experience with a 'typical' ms symptom? Did you know what it was the first time you felt it?
- Margo
Wednesday, April 9, 2014
Merit Badge for Demyelination
Oy. Okay, so today has been one of those really rough days.
I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine. Which, if you've never had to do that, feels like torture after about 80 minutes. It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"
So I was hoping that the MRI experience would be over for this year. WRONG.
Today, I was supposed to go in to start Gilenya. I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process. So I decided to go in way early just in case. I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else. So who else wouldn't be freaked out?
When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed. But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.' I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.
WHOA, hold the phone, I failed? Let's recap. I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right. After a battery, got diagnosed, then treated with a 5 day course of Solumedrol. It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway. The 9mm lesion in my left temporal lobe is now 3.3cm. Centimeters!! Tripled in size. Whoa.
Just, whoa. How are you supposed to feel about that?
They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP. I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half? What a freaking nightmare!!!
Oh, and did I mention ... happy birthday to me? OY!
I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine. Which, if you've never had to do that, feels like torture after about 80 minutes. It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"
So I was hoping that the MRI experience would be over for this year. WRONG.
Today, I was supposed to go in to start Gilenya. I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process. So I decided to go in way early just in case. I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else. So who else wouldn't be freaked out?
When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed. But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.' I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.
WHOA, hold the phone, I failed? Let's recap. I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right. After a battery, got diagnosed, then treated with a 5 day course of Solumedrol. It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway. The 9mm lesion in my left temporal lobe is now 3.3cm. Centimeters!! Tripled in size. Whoa.
Just, whoa. How are you supposed to feel about that?
They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP. I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half? What a freaking nightmare!!!
Oh, and did I mention ... happy birthday to me? OY!
Monday, March 31, 2014
For every 'to,' there is a 'fro'
I just got home from work about twenty minutes ago. And not even ten minutes into walking in the front door, there was an unexpected knock. My friend, who is one of the few whom I've told about the diagnosis, came by to surprise me with a bouquet of sunflowers.
What a wonderful gesture! Faith in humanity restored. Even though I dislike few things more than unexpected visitors (as I am a slob and could not invite her in due to the status of my apartment), that was a great little surprise.
I hope that today, someone in some way, brings you some sunflowers, too.
Love all - :)
What a wonderful gesture! Faith in humanity restored. Even though I dislike few things more than unexpected visitors (as I am a slob and could not invite her in due to the status of my apartment), that was a great little surprise.
I hope that today, someone in some way, brings you some sunflowers, too.
Love all - :)
Friday, March 28, 2014
Sensational
The weirdest part of this latest flare up is the lasting sensations.
In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling. For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates. Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet. Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.
It is possible that this is my baseline. What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack. Now I will compare future symptoms to what I am currently experiencing. But, this could be much worse. On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect. Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot. I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.
The last few days have been spent at a conference for my profession. I planned to attend a long time ago; I am presenting a research poster. The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down. This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.
I talked to my coworker who also has MS and asked her when she was diagnosed. There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist. Her sensory absence was so bad that she would accidentally burn herself. Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI. I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.
What kind of lasting sensations do you have at your baseline? Have you eventually gotten used to them, or does it still bother you?
Margo
In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling. For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates. Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet. Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.
It is possible that this is my baseline. What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack. Now I will compare future symptoms to what I am currently experiencing. But, this could be much worse. On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect. Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot. I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.
The last few days have been spent at a conference for my profession. I planned to attend a long time ago; I am presenting a research poster. The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down. This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.
I talked to my coworker who also has MS and asked her when she was diagnosed. There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist. Her sensory absence was so bad that she would accidentally burn herself. Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI. I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.
What kind of lasting sensations do you have at your baseline? Have you eventually gotten used to them, or does it still bother you?
Margo
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