Hey everybody. So, I was diagnosed with FA about 8 years ago, when I was 16. I know my condition is untreatable, but I feel like I should maybe be talking to a docor about it anyway? I don’t know. I was doing a natural history study for a while, but I dropped out a few years ago, and haven’t really engaged with the medical system since then. I recently did some googling and found a hospital with an “ataxia unit” in my area. I tried calling them, but they want a referral from a PCP, which I don’t have, and I’m not sure how I’d even find one who wouldn’t be put off by the rare disease thing. So it seems like it might not be worth it if they’re just going to tell me that my condition is untreatable and there’s nothing I can do.
I would find yourself a PCP and they may refer you to a neurologist. I would get established with someone because if your condition does change and you need to apply for disability you will need medical documentation to back it up and they will want to know dates/procedures etc.This way you will be established with someone if the time comes and you won’t have to look for someone in the future. I don’t think an ataxia specialist is necessary. I’ve never been. I was diagnosed officially in my 30’s and I’m 51. I do think exercise (whatever you can do and something you enjoy (swimming, yoga, lifting weights, walking/running)) and exercises to work on your core (neck to butt) are helpful. I would recommend physical therapy (make sure they work with neurological patients and not orthopedic). Family doctors (PCP’s) are not “put off” by rare diseases. You need to find one that will work with you and explain things so you understand. Mine is fairly stable and my PCP just checks it every year when I go for a physical. Your PCP shouldn’t be put off by you suggesting things. I actually called him and asked him to refer me for physical therapy. PT was a life changer for me. I walk better and trip less than I used to and even reaching for things I fall less because I know how to do it. Good luck!
Over made an appointment to see a new PC, and I might ask them about physical therapy. Do I need to call ahead and warn them about my condition, or anything? I got the impression that there NP who did my last physical had never heard of it before
I’ve been doing yoga for a little over a year now, and I think it’s helping.
i also have a rare ataxia disease. [cerebeller ataxia] . i go to a nuroligolist once every 6 months now. nothing they can do for me. i tryed pt but didnt do me any good. sometimes it does good for people with ataxia sometimes it dont. i do exercises thou . i do walk. do go to a nurolist and get tested thou. maybe there is nothing they can do for you like the rest of us but at least youll know for sure whats going on.
Your initial appointment with the therapist they will do an evaluation of what you have, your goals, etc. I would make a list prior to going to your first appointment of things you want to do (walk better, climb stairs, look up at sky without holding on, etc). Most people haven’t heard of it (it’s on the rare diseases).
I read somewhere to try a neurologic chiropractor. I did but my insurance would not cover it, so I paid out-of-pocket. I learned some very interesting things from her.