Happy Saturday, Everyone!
I'm having a bit of a dilemma. I need some advice on MS meds to start after pregnancy.
I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes. Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring. Now they can monitor you from home, but that seems so unnecessary to me. Back then, I could have missed my pill for almost a month before my doctors would freak out. I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.
I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing. It just seems like more of a pain in the butt than I am willing to deal with.
I was initially recommended for Tysabri but I am JC virus positive. Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.
I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me. Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant just terrifies me too much. I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares. There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.
This is going to be a hard call, because I know many of my other options are shots. Needle fatigue scares me, but I'll do what I have to do. Any advice on experience for these things is so appreciated!
Whew. At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today. I am getting off/on feelings of numbness in my left calf. I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time. But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.
In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss. This is essentially the same thing that happened with my eye. I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks." No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease. That's great that she had ON and it got better, but mine didn't. This wasn't because I had a poor attitude, it was because I didn't get treatment! There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.
Oy.
So back to square one. Advice and experiences from your medication experience is welcome. I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out. And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)
Love, MSloan
Showing posts with label pregnancy. Show all posts
Showing posts with label pregnancy. Show all posts
Saturday, April 2, 2016
Sunday, February 14, 2016
Keeping A Record
I have been on a path of healing.
My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness. It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again. As an artist, that's very painful. But I'm trying to move forward, and not stay stagnant with my feelings.
Facebook can be an excellent record keeper, did you know that? As I have been getting older, I have become less whiny in general over my circumstances. But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were. Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea. I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months! As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record. And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.
I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal. This book describes me and my experience to a T. I feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.
I hope you find your healing as well. Love to all,
MSloan
My MS symptoms have somewhat come and gone for the last week because I got a cold, but I am fortunate that the signs haven't been worse than some general annoyances with numbness. It's been well over 10 weeks now with distorted vision in my right eye, and some days are better than others, but because I haven't been able to treat the inflammation I am trying to come to grips with the likely fact that my vision will never be the same again. As an artist, that's very painful. But I'm trying to move forward, and not stay stagnant with my feelings.
Facebook can be an excellent record keeper, did you know that? As I have been getting older, I have become less whiny in general over my circumstances. But six years ago, I wasn't as disciplined, and I wore my hearing on my social media sleeve, as it were. Today I went through late 2009 and early 2010, and found a lot of my 'initial symptom' complaints that I keep speaking of - struggles with near constant headaches that felt like migraines, getting glasses, feeling moody and irritable, and as the semester began in early 2010, the nausea. I used to go through my facebook to find the last time I had complained about my period, only to find I hadn't had one in five months! As annoying as you might find your 'friends' complaining, keep in mind that it's a way to keep a record. And it can end up becoming very important if your persistent symptoms lead to a diagnosis down the road.
I started reading a book yesterday called "Will I Ever Be Good Enough?" about daughters with narcissistic mothers and learning to heal. This book describes me and my experience to a T. I feel that much more blessed to have found it, and to be able to acknowledge my issues head on before my own daughter makes an appearance.
I hope you find your healing as well. 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
Thursday, October 29, 2015
Feeling Low
Sometimes I feel like I'm climbing a mountain with no summit and no oxygen. I keep climbing and climbing, but I just can't get there. I am frozen with cold. I can't feel my feet. I can't feel my fingers. But I keep climbing anyway.
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
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
Saturday, October 24, 2015
New Hope
No, not Star Wars. MY new hope!
I mistook my MRI date for the 24th, today, when it was the 29th. I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning. I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.
My doppler finally arrived, so I was able to bug my baby and hear the heartbeat! So exciting. The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better. Puts everything into perspective.
Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway. So, all good things.
On that note - I have to make a special shout-out to pregnancy pants. They are the most comfortable things ever, and I will most likely never go back to regular pants again. Why would I now that I KNOW the secret? :)
Love to all today, I am making chili for a cookoff this evening. Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan
I mistook my MRI date for the 24th, today, when it was the 29th. I don't know how I messed that up (pregnancy or MS brain, probably) and so I didn't have that done this morning. I rescheduled it for later this week at the butt crack of dawn; at least by doing that I will get it done.
My doppler finally arrived, so I was able to bug my baby and hear the heartbeat! So exciting. The great little 'whoosh whoosh' sound is so uplifting and makes me feel much better. Puts everything into perspective.
Went out with the hubby and got some baby stuff today; we officially have a crib, a baby swing, and tomorrow I will be going back to get the matching stroller - it wouldn't all fit in my car, but now I have a coupon if I get it tomorrow anyway. So, all good things.
On that note - I have to make a special shout-out to pregnancy pants. They are the most comfortable things ever, and I will most likely never go back to regular pants again. Why would I now that I KNOW the secret? :)
Love to all today, I am making chili for a cookoff this evening. Hopefully I won't burn anyone out; these Californian's don't know spice...
MSloan
Wednesday, October 21, 2015
T Minus...
I'm giving it until Friday to see if things improve. T
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
Tuesday, October 20, 2015
Relapse?
Hey all. Today has been an interesting day.
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
After making such a big, stinking deal of being happy that being pregnant reduces MS relapses, I seem to have forgotten the operative word:
REDUCES.
It doesn't eliminate relapses, and I woke up this morning with no feeling in my left toes, and none in my right big toe. I don't know if this is my MS or if it's somehow related to my pregnancy, but I feel like an idiot!
More updates to come - Love all!
Monday, October 19, 2015
Chat MS: October 19th, 2015
Hello, readers!
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
Thursday, August 27, 2015
My, how things have changed...
It has been a strange last few months.
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
Can you all keep a secret?
In May, I went off my medications. I stopped taking Gilenya, the Lexapro. I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms. The Lexapro was another story. As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone. So I weaned.
Oh.. but weaning is so hard. I broke my pills in half and took then every other day for weeks. When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train. It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).
I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week. I have been spending so much time at the lab in Kaiser that they all know me there. It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids. GROSS SOLLY HEADACHE.
Well, I might as well get to the point then, shall we?
A little over a week ago, I took a few days off work. I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare. I really needed some time to myself and to think. But on my first day of my little vacation, I took a pregnancy test.
:)
It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking. I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab. Nothing at this point is certain. Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya. However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual. The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.
I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that. Which is such a sad thought. I have worked so hard to make my family happy and have not succeeded.
I am tired and she is, of course, berating me over email about the same old thing. I guess she won't find out today that she will (most likely) be a grandmother in April.
Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo
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