Your right Rose. I have felt so alone before I found this group. You dont see people around with ataxia. But their are many here. It is weird. We feel so alone in the world with ataxia. But when we come on this site. Everyone can relate!
rose said:
That's interesting Willis! It makes me feel less "alone" with my ataxia as before I found this site, I felt as though I was the only person in the world with symptoms like mine...,I'm not kidding! Before I was diagnosed, I had never even heard of ataxia! Although I'd never wish ataxia on anyone, at least those of us that have it can be supportive of each other..., ;o)
Hi Jeannie, What do you mean be focused movements? I have pt twice a week. and a yoga class once a week. I know it is not enough. During the holiday they were all cancelled. And I am really sore and stiff now. I am thinking about getting a WII fit, because that is part of what I do at pt, and it has been an immense help.
I have been off Gluten for about two years. I first went off to see if it would help my migraines. Then I noticed that it helped more things. I also went off deadly nightshade foods, and I try to stay off sugar because of joint pain. I know the nightshades and gluten cause alot of inflammation in my joints. And lot of pain. When I eat them, I cannot stand up, and my knees, elbows, hip, back and several smaller joints all feel on fire. I have a really hard time with the sugar. (staying off) Over the holiday not only were classes cancelled, but I did not eat well all the time.
But I have not been having migraines so much, in fact it has been three weeks! I told my pt, he did not think it was the things I am doing in there, but I don't agree.Maybe it is the Yoga. Well something is helping.
Jeannie Ball said:
Hi Bella, I believe that Rose is so right about focused movements (regular focused exercize daily). If I skip a day I seem to get more stiff and tence. I also have mild headches. I used to have more mirgraines when I wasn't doing focused movements daily. In fact I forget that I had to deal with them before since I don't have them anymore. Thank you for this reminder I can add letting go of that pain to my list of things that the Yoga and Pilates that have helped me.
I also need to add nutrition seems to help any symtom. Helping my body be stronger to withstand any symtom or overcome it really. I've gone Gluten Free, no flour or refined sugars, additives or processed foods help allot. I've been feeling so good sometimes I forget that I had bad ataxia symtoms. I had refined sugar a few days back and it also reminded me and it threw me back into having symtom's so I had an aha moment because of that. I'm sure you must have journaled your foods for migrains right? Have you tried going off Gluten for a few months to see if it could help you?
I did see my neuro recently. Seems she is sure I have ataxia. She seemed a little surprised that I was wondering.
I have had genetic testing, and I am waiting on the results. She had a report from that doctor, he is sure it is hereditary, I guess I just wait and see if there is a type.
I have been on a long road the last 5 years, trying to figure this out. Maybe I will be getting an answer soon.
Michael said:
Hi Bella,
Though I can not add any real help to the discussion, I can tell you that you are most welcome here on LWA.
It is always good to explore various avenues to 'pin down' our medical condition(s) and to seek help. LWA is a good place to do this.
Please update us as you can when or if you get to know more about your own health. It may be that some detail you think inconsequential could be of great help to others on LWA - even if it turns out you do not have ataxia!
I am not a medical professional but do see a lot of what other people with ataxia, including myself, have experienced in the experiences you relate in your post. By all means, suggest ataxia to your neurologist. Just remember that it is a suggestion only though!
Try to stay positive, best regards to you. :)
EDITED: My head says I have pressed the correct key but my eyes prove my fingers have been mischevious some times.! :)
I had the same symptoms you are describing especially dizziness. I had a MRI done took it to a neurologist he saw I had cerebellar atrophy. I went to a MD doctor who specializes in nutrition she sent my blood to Spectracell Laboratories
in Houstin Texas the results came back I had thiamine deficiency which is very serious because prolonged thiamine deficiency causes cerebellar damage. Let me know if you want to take this test. You can reply on my post How to improve slurring and choking.