Is there anyone who is undiagnosed or can anyone offer advice with how to cope?

I have ataxia symptoms which began 16 years ago with the feeling of being on a boat..Since then I have had periods when I've been ok, but then the dizzy unsteady feeling starts again and continues for at least 9 months. I was very unwell with these symptoms plus very heavy fatigue 2 years ago. I went gluten free and this seemed to help - after 5 months on a very strict diet. After a year on the diet I felt great and began to run up to 5 miles. I thought the illness was in the past. Then in March this year the dizziness started with nausea, nerve pain, sometimes numbness in face, and my balance got dramatically worse. It's so difficult to walk, and the fatigue is really strong. I've been waiting to see a neurologist, and it'll take at least another 3 months to get appointment. (I had less control with my diet between Jan and beginning of March as I was traveling).

Sorry for the long list of complaints, but maybe someone can relate to these problems, or offer some insights

Thank you


Sorry for your pain Molly.. I hope someone can identify with your symptoms. I know what a long journey it is from seeing neurologist to getting a diagnosis but hopefully you can get some medication to relieve symptoms.

You could contact Ataxia UK helpline for advice about support groups in Scotland.

Since you are looking at an ataxia site, please realize that you may or may not have "Cerebellar Ataxia". Until you have been tested, please don't assume ataxia is the issue. I'm saying this because for many generations, my husband's family has had parkinsons. Everyone just assumed since Great Great Uncle whoever had parkinsons, they got it, too. In fact, none had been tested and once my husband found out he had a genetic form of ataxia rather than parkinsons, everyone was more than willing to get tested. You could have any number of things going on so don't borrow trouble by looking on the internet and deciding you have something. If you internet search long enough, you have symptoms of everything in the known world.

Thank you Patsy and Kit for your advice.. I regretted my post as it was one of those bad nights experiencing new weird and frightening symptoms and I needed to do something positive to take my mind of my fear. Silly to imagine somebody out there could answer my questions! So thank you for your patient response. You're so right Kit about the internet and assumptions, although I have found some useful tips for exercise, just ordered walking poles to see if they help. I joined this site for friendship with people who have similar issues as I have ataxia symptoms whatever the cause is, and feel it'll help to connect with others, as I have nobody who can give any advice. Even physio discharged me after my first visit as they didn't know how to help me without diagnoses, so I suppose you do feel like you have to try help yourself no matter how feebly. Anyway I'm soon seeing a neurologist, as soon as I got the appointment I felt more relaxed.