My name is Anna and I’m technically new here, I suppose. I’ve been lurking and reading topics since August, but haven’t posted until now.
I have most recently seen an Ataxia specialist after two general practitioners and a neurologist couldn’t find anything wrong with me. I don’t have a concrete diagnosis yet, as the specialist I saw isn’t sure of the origin of my Ataxia symptoms (is it due to a vitamin deficiency, is it hereditary/genetic, due to another disorder, etc.), so I still am not sure what to call what I have.
Until last week, I was pregnant (from 11/11 until 12/27) and had heard of symptom reduction during pregnancy, but had never experienced it at this severity. I was pregnant from 6/17-10/17 and 11/17-1/18, both of which ended in miscarriage also, but my Ataxia symptoms weren’t severe then, just something I noticed. People around me hadn’t caught on. With this, pregnancy, though, I realized my appetite was normal again, I wasn’t as clumsy, had much less difficulty walking, could talk without sounding drunk, etc. Now that’s it’s been a week since my D&E and the hormones aren’t as strong, I feel worse than ever. I have to hold on to walls/furniture, etc. every time I walk, can’t hold something without dropping it, and speak with such a slur that it sounds like I’ve been drinking for hours or days straight. I’ve told my husband that a normal day is about a 4-5/10 (with 0 being the worst day ever and 10 being a perfect day) and yesterday, it was probably a 2.
I know that the depression, physical pain, and other emotions surrounding the loss of this pregnancy (my third baby) have a lot to do with my wellbeing right now, but I can’t just ignore these symptoms.
Does anyone have any insight/solutions/an ability to relate? Anything, really, is helpful at this point. I just feel so isolated in this; it seems that no one “gets” it.
Thank you in advance and it’s wonderful to meet you all
Welcome Anna. I’m male, sorry I can’t answer your question.
Welcome. Finding the cause of ataxia had always been important to me. I hope the specialist can help you with that.
Hi Anna, welcome I’m so sorry you’ve had to cope with the trauma of 3 miscarriages. I’ve had one myself so I can relate, although I didn’t have ataxia diagnosed until much later. Your hormones must be at sixes and sevens, which won’t be helping ataxia symptoms.
You’re so right in saying ‘no-body gets it’ when you try to describe the nonsensical symptoms we experience. It’s an uphill struggle trying to explain.
For me, the severity of symptoms can vary enormously, sometimes changing throughout the day Then I can have a run of good days and wonder what’s going to happen next
It can be extraordinarily difficult to pinpoint the exact cause/type of ataxia. Sometimes, even seeing a Specialist Neurologist can make you feel as though you’re no further forward Many people think the answer will be found simply by DNA testing, but not all types are genetic. And, there are numerous types of genetic Ataxias, most of which will have to tested for individually. But, by far the best course is to be in contact with a Specialist Neurologist.
You are among friends here, we can all relate to your feelings and how challenging it can be to cope on a daily basis. It is awful speaking with a slur, being unable to follow or join in a conversation because you just can’t process thoughts fast enough, humiliating to be thought drunk, not even being able to hold a plate securely, wall walking etc etc etc…
Support groups such as this enable people to give vent to their feelings when it’s just not possible to get anyone else to understand the frustration. As with most conditions, it’s only when you experience something yourself can you fully understand the challenges. Would you find it helpful to contact a local Ataxia Support Group, often speaking face to face with others who have similar difficulties can be the best help. There’s a link to groups on ataxia.org
Just remember, you’re far from being alone with this xB
I’m just throwing this out there because it’s interesting. I remember my last colonoscopy. Doing the prep was no fun but I had done it correctly. Anyway, the next day I had the procedure [they put me to sleep] and everything was fine. When I awoke after the procedure, my balance was the worst it’s ever been and I was bouncing off the walls. The doctor told me to drink Gatorade. It seems that the prep screwed up my electrolytes and Gatorade would restore the balance. He was right.
Can pregnancy do the same to the electrolytes?
Thank you for your kind greeting, regardless I hope you have a great week!
Thank you for your response! I am working with a Neurologist who specializes in Friedrich’s Ataxia, but who is also literate in other types as well. Tests have shown that my Ataxia is not due to protein or mineral deficiency, so he’s looking to move forward in doing Exome Sequencing to figure out where it’s coming from. It’s frustrating because although I want a concrete diagnosis, I also want some sort of treatment to make this better. I hear about people taking meds and doing various things and being able to work and be productive and I just feel like a bump on a log
Here’s hoping for an answer to come soon!
That’s so odd that you had that experience! Pregnancy hormones actually improve symptoms and create some sort of positive environment, so negative symptoms subside.
But, I would assume that the sudden crash in them could screw with electrolyte balance. I’ll look into getting some Gatorade this week to see if it helps!
Thank you for your insight!
Chas, not to alarm you, but I’ve heard/read from various sources (most are not professionals in any way so I prefer not to mention any names or identify any sources) and this maybe hogwash, but, that anesthetic may in fact be responsible in worsening ataxic symptoms (balance in particular)
The anesthetic somehow speeds up the process of cerebellar degeneration.
Again please don’t take my word, but it’s just something I’ve heard.
Who knows hutchy. You maybe be 100% correct. All I know is that the Gatorade helped. BTW, the doctor called the next day after the procedure [good for him] and I was still screwed up. That’s when I took the Gatorade [drank a 32 oz. bottle] and felt MUCH better that day.
Well that’s good that you recovered without too much trouble.
Ironically my father who had an anesthetic overdose while undergoing some sort of exploratory surgery, experienced first hand the negative effects of anesthetic can have on the cerebellum. He ended up with an acquired, permanent ataxia from the overdose. Replenishing his electrolytes did help but he suffered with ataxia for the next 20 years. Drs. claimed that he may have unknowingly had a underlying ataxic condition that was accentuated by the overdose. Who knows, maybe the drs. where just covering their butts!
I kinda doubt it because I had Ataxia for years before the procedure. Good news though! The doctor only found 1 small polyp which he removed. Don’t need to see him for 5 years - now 3 years. Don’t think I do it again though. I’ll be 73 in May.
Anna, I’m so sorry for your losses.
I have only been pregnant once. My ataxia did get worse, and it was only noticeable to others as I got further along. I couldn’t walk at the end.
I think it’s very likely that your ataxia was worse because your body was working on these pregnancies, and also I think you had reduced energy to devote to the pregnancies because of the ataxia.
If you try again, I would first give yourself a good long time to recover, emotionally and physically. Then I would put yourself on bed rest immediately. So stay off your feet, don’t challenge your balance too much, sleep more, rest more, stay away from stress.
Thank you so much for your response! I’m sorry it took me so long to reply! My emails that told me that people had replied got sent to my spam folder so I just noticed lol.
I’m glad your experience was a relatively positive one! I hope that our answers are fairly simple and they can remove something (polyps, cysts, anything) and we’ll have a safe, healthy next pregnancy
Thank you for your advice! I actually experienced the exact opposite. How odd! My Ataxia symptoms were better when I was pregnant and awful after a miscarriage once my hormones had plummeted.
Next time I get pregnant, I’ll definitely work on taking it easy and put myself in bed rest. It seems like doctors haven’t taken my pregnancies very seriously do I guess we’ll have to take them into our hands from here on out. :-/