I have an unknown (new) form of spinocerebellar ataxia. I'm 36 and my official onset was 9 years ago, even though I had rare symptoms as early as 10. I'm three weeks pregnant and wondering what to expect.
Before my pregnancy, most days were pretty much symptom free- I could even stand up at a bar and drink for a couple hours. When I'd get the flu or a stomach virus, I would have moderate to severe problems getting up, standing, walking, using my hands and talking and it would take a few days to recover. I'm wondering if I'll get like this during labor. I want to have a natural vaginal birth, but I'm afraid that option will be out as I get tired being in labor.
So far I'm just a little more tired sometimes and a little more unstable, but nothing that I think anyone else would even notice.
If anyone wants to share their experiences, I would LOVE to hear them!
From my experience and knowledge base dealing with my wife’s ataxia, it sounds like your ataxia flares up when your auto immune system kicks in. Which means it is an inflamatory version. If you have been tested for the various genetic versions, and tested for things like spinal/brain cancer, I highly recommend looking into lyme’s disease treatment. And remember that 60% of blood tests for lyme’s come back false negative (my wife was 2 out of 3 negative) and only 30% get the telltale rings. Lymes has been known to lie dormant for 10 years as it hibernates in your system. Best of luck!
Thanks EdMoose (nice name)!
50% of my dad's family has SCA and it goes back over 200 years, so I think that's pretty much it. I have noticed that I developed an intolerance to gluten and I need extra immunity help, but I think those just exacerbate my existing problem.
My cousins who have had kids had them before they developed symptoms, so I hoping some stories here will help me figure out what to expect.
I have an Ataxia and have a 19 month old! It was harder at the end of my pregnancy. Did have a c section. It went well. I was harder to to walk when I was bigger as you center of balance was different.
Hi Marjorie, my ataxia started about 4 months into my 3rd pregnancy. It started with hand cramps, then my balance started going, then my speech slurred. They were obvious symptoms to me, but at the time mild enough for others to not notice or they attributed it to the pregnancy. The further along I was, the worse the ataxia became. My obstetrician thought I was early stage MS, as did the neurologist I saw as soon as my daughter was born. The symptoms were obviously not pregnancy related (although the unrelenting fatigue and iron deficiency was certainly made worse by pregnancy) as they did not go away after pregnancy ended and have slowly gotten worse. 3 years have passed, I am now moderately disabled from loss of balance, fine motor loss and tremors. I don't have MS, I have cerebral Lyme disease which took ages to get diagnosed. I hope you pregnancy goes well, enjoy it as much as possible- such a special time- and try not to stress as it makes everything worse, know it's easier said than done. Although my body struggled with pregnancy, I had 3 vaginal births- did need epidurals, but for reasons not related to ataxia- and all 3 were thriving, healthy, 9lb babies... and they are what motivates me when I get frustrated at my horrid, physically debilitating symptoms. All the best :)
Thanks for sharing, Jennifer and Belinda!
I'm now three MONTHS pregnant (I was three weeks when I started this topic). I'm in my first week back at grad school and I'm thinking I need to take the year off. The migraines, nausea, and exhaustion are still pretty bad and I'm starting to suspect it's because of my ataxia. I forget that even when my body's not going through anything else it's still working really hard to stay balanced. When I have something like a cold or am going on little sleep I suddenly remember that I'm disabled.
I'm choosing to look at it like you said, Belinda- this is a special time and I need to just give myself a break and enjoy it. I'm still going back and forth about whether to try a midwife or just go the traditional doctor route. I'll update later when this decision becomes clear.
In the meantime, I would love to hear any other thoughts or experiences of pregnancy with ataxia (or any neurological issue)!
Update: I'm now 32 weeks pregnant, so I have a little over a month to go. I'm basically on bedrest, but not doctor-imposed. I just can't do very much anymore. I have an OB, a doula, and a high-risk OB, but they're all pretty open about not knowing what to do with me because I'm older (36) and there isn't much research on pregnancy and SCAs. The high risk guy is recommending I do an epi because he thinks the pain will make my ataxia worse. I've never been in childbirth before, so I don't know what that's like, but I've broken bones and had a half backpiece lasered off with no anesthesia and I was able to take those just fine. I don't think pain has ever made my ataxia symptoms worse. Being tired does though. It's frustrating to go to doctors and to know more than them. Every time I ask them a question they don't know.
I'm also more physically miserable than I've ever been in my life. I'm in constant rib/back/joint pain and I'm exhausted. And the weight gain has been murder. It's so much harder to move or stay balanced. There's been no "enjoying" this time like I had thought. I'm grateful to be having my little boy and I can't wait to meet him, and YES it's been worth it. I would do it again for this baby, but I'm not going to be having a second.
Thank you Darja!
I'm 35 weeks now and I think I'm having early labor this weekend. When I called labor and delivery they decided I didn't need to come in. I would have LIKED to come in and get checked, but it's the weekend and people have dinners to attend and sports to watch I guess.
In addition to the regular pain, I've had a headache, nausea, pressure in my nether regions, a constant light cramping like menstrual or diarrhea cramps, which gets worse with activity, braxton hicks tightening, also worse when the baby moves or when I'm active, shaking as I wake up, graying out a couple days ago while standing, such difficulty standing that I often just sit on furniture or the floor rather than fall, and a new walk that's half zombie lurch and half duck waddle. Those are a combination of labor symptoms and what my ataxia is like if I'm sick or there's something else wrong with me. What doctors don't get is that if my ataxia is getting this bad this quick it means that something else is going on with my body.
So the SOMETHING ELSE needs to be checked out. I'm going to call my regular OB tomorrow (Monday) and insist that someone check me to see if my son is trying to squirt out.
BTW in case anyone is ever interested, the high risk OB advised me to take one or two lortabs and over the counter sleep medication rather than not sleep. He also referred me to a physical therapist who suggested a walker and that I make sure to rest after each activity so I don't get overtired. Like shower, sit down for an hour, feed the animals, sit down for an hour, lightly clean, then sit down, etc. And she suggested I modify some yoga and pilates so I can exercise lightly while holding on to something or being on the floor.
I think I was wrong about the pain. When I'm putting so much energy into dealing with pain it does seem to make it harder for me to do things. And the ataxia exhaustion makes me less and less tolerant to pain. The high risk guy obviously did a lot of research after first seeing me and he has since impressed me with a genuine desire to help me, so I'm more inclined to listen to his opinions now.
I'm going to update this for anyone who needs the information in the future. Remember that no one's symptoms are exactly alike.
At 39 weeks I needed a walker to get around. I'd gained 80 lbs and could barely do simple things like take a bath and move around. My husband isn't a big guy and couldn't help that much. I don't think I was falling much more than usual, but I certainly didn't want to fall at that point. So at 39 weeks they used this stuff to dilate me and that started the contractions. After a few hours I started pushing and I pushed for about two hours. I could feel the contractions, but had no urge to push. The nurse told me that I was doing it right and had strong pushes, but it felt to me like I was pretending to push and this couldn't be "real" pushing at all. Oh and they gave me an epidural, which took 45 minutes and three tries to get in because of my very mild scoliosis.
After two hours the doctor said my son's scalp was moving down but not his skull and he didn't think I could keep pushing for hours and hours. I was already starting to feel confused and exhausted. I asked for a c-section and they rolled me right in. My son was zipped right out with no problems. I didn't feel him coming out but I sure as hell felt them putting me back together. I yelled and yelled and there was nothing left to give me. The morphine and whatnot did nothing and all they could do was hold my arms. Then they pushed on my guts for another couple of hours to get all the junk out and there was more yelling and restraining. I have red hair and they said this could have been a factor in my increased pain.
I couldn't get up for a day, then I needed a walker and wheelchair for a couple weeks. I lost about 50 lbs in the first 2-3 weeks and then could walk around just fine. This could have been because of losing the weight or because I was back on Topamax-who knows. I can't breastfeed my son because of the Topamax, but he eats so much that's really okay with me anyway.
Four months later, my son is super, super advanced. He's already talking, sitting and standing a little unassisted, walking with help, and can follow simple instructions. No signs of ataxia. I can run again, but I'm still out of shape. I would not have another baby, and I feel I risked our lives having this one. But I'm very, very glad I had him. :)
I'm 37, I was diagnosed with a novel subtype of inherited SCA at age 28, with symptoms going back to age 10. I avoid gluten, work out, take Topamax, Ativan to sleep, and I live with my husband who is my sometimes caretaker. People in my family usually die of SCA 30 years after onset.
I have 2 children one the year before I was diagnosed and one 5 years after. My first pregnancy was smooth sailing up to a month before she was born. My blood pressure sky rocketed and I was put on a mild bed rest. After 24 hours of labor I did have a c section. My second was rougher. I was sick with a slight fever for 3 months. I went into labor 1 month early. I did have a c section again. My ataxia caused the biggest problems after the baby was born due to lack of sleep.
I have Friedreichs Ataxia, I was diagnosed 6 years ago (age 20) and I have a 14 month old son. My pregnancy went well, I had my tough times but I don't really think it made a good or bad difference. Though I did feel I had gotten worse after baby was born and I think that had a lot to do with lack of sleep, and the fact that you sit so much during the day while nursing. So as difficult as it may feel really try to stay active pre and post natal, it will pay off! and as for labour I would not worry about it! I did everything completely natural and when your body is going through that it can do amazing things. for some reason my most comfortable position was standing on my tippie toes ( I can't do that normally without falling over! haha). Labour is intense and will suck whether you have a disability or not lol. Take care of yourself and exercise now and afterward, good luck with everything and congats!!!
I haven't had children yet and i'm 30 and just recently got married and often wonder if me and husband decided to have a child whether it would affect my ataxia. I've noticed just looking after his teenage children have taken its toll on me being more tired and unsteady, in the last week alone i've dropped a glass and cut my hand by the thumb severing the nerve in my thumb. No one mentioned how it would affect me if got pregnant later on in life as was diagnosed as a child myself so never thought of the implications as an adult. Lots of people over the last 12 years or so have asked me so what would happen if you got pregnant? Can you even have a child having ataxia? I never thought about it till I hit my mid twenties!
I had a suspicion and explained from my understanding I could have children BUT if I chose to I would have more problems with my ataxia than usual due to the increased weight i'd have to carry and tiredness would be stronger than usual. That was all I could explain I applaud you for having children and love the fact you posted about your experience for others who are considering having a child or just newly pregnant with ataxia or just curious like me thanks again so if I get asked I can say it's different for each person with ataxia I won't know till it happens. =0)