Had the appointment yesterday.....that's it, Neurologist. The Doctor I saw said it definitely isn't Parkinson's, MS or Essential Tremor. I nearly took my eye out when she asked me to touch my nose so we had to do that exercise touching her fingers, had to laugh.......Another exercise, walking toe to heel was a bit wierd, it was if I couldn't put my foot to the floor, my leg started shaking so we had to pass on that one too. No refIexes in my knees or ankles. I showed her my writing and she was totally honest, she hadn't seen anything like it. The Consultant came in and did some of the exercises with me and he didn't know what was happening either. They were both really reassuring though. The Consultant has told me to carry on with the gabapentine which I usually only take when my neck flares for the nerve pain and he's putting me on Beta Blockers. I've got to have another load of blood tests and an MRI and then see a top Professor who deals specifically with tremor and motion. I asked about Ataxia and the Dr seemed to think it was only genetic. Well at least they're taking me seriously now....
I just thank God I found this site, you lovely people are keeping me sane!!!!
Hi Marie, I've had these symptoms now for 30 years and no one's taken any notice as it has flared up and then gone. Each time though something has lingered and now it's got so that I can't write or hold a cup. I was tested for MS many years ago but that was negative so it was just a shake of the head. I'm just glad that it's now got so that something has to be done, in a good way I mean, I'm not glad to be like this......:)
Marie Turner said:
I have only just got tremors now after 6/7 years.I have CA unknown cause.Each y'sear I do the same tests.
It is a bit of a mystery isn't it.My balance has only just gone.You could have years of Ataxia and just feel the odd symptom.
We are all different and do not have to have the same symptoms.It is niceto have a label thouugh.
I just call mine Cerebellar Degeneration.That seems a good umbrella term.My past pointing went away with Vitamin E.
Iwas told by a Neurologist my Ataxia was stress.It is horrible not to be believed when you know something is wrong.It was only when I had the MRI I was taken seriously.Don't forget we have mental capabilities to consider as well.
I may have to wear a bib and seem like a baby in some ways but the wisdom is something which deepens as we become older and having Ataxia has made me more patient.
Hi Beryl, I think my main problem has come from having RA (Sero Neg) and Fybro so it's all been mixed in together aldnd just blamed on that. It would be interesting to know though, maybe we should set up our own research, haha xx Beryl Park said:
D'you know what, I've had various symptoms for years and years, back and forth to GP etc.
Now I can recognise there have been 'flare ups' and as you comment, each time after things
settle, something seems to get worse permanently. I wonder if many people have noticed
this happening? :o) xB
Sun intermittant here but otherwise very pleasant!
Zhez said:
Hi Beryl, try to keep my pecker up, helps when the sun's shining!! :) xx
Beryl Park said:
Hi Zhez!
I'm glad you haven't lost your sense of humour! Just do as they ask, it keeps them happy.xB
Hi Marie, when I first started talking to the Neurologist she did ask me about stress but then after the exam didn't mention it again. It is really frustrating, I've yet to have the MRI, my GP can't wait for the results, she's got the bug now! As for mental capabilities, I was an adult tutor and the most upsetting thing is now not being able to write. I can still manage the keyboard when I'm not having a really bad shaky day, that's why my input to the site is intermittent. My short term memory is shocking though, not just everyday things but sometimes really important stuff that needs dealing with. I try to catch up when I'm feeling ok, if I remember what it is I'm supposed to be dealing with, that is! Take care x Marie Turner said:l
Zhez
Iwas told by a Neurologist my Ataxia was stress.It is horrible not to be believed when you know something is wrong.It was only when I had the MRI I was taken seriously.Don't forget we have mental capabilities to consider as well.
I may have to wear a bib and seem like a baby in some ways but the wisdom is something which deepens as we become older and having Ataxia has made me more patient.
Hi Patsy, The last neurologist I saw before this time completely ignored all the systems and just ordered an MRI for my neck. I told the new ones about it and they've assured me that they won't give up until they've got something solid'. Seems like they're on the ball, I had 6 vials of blood taken today!! I am so glad I found this sitefor, you've no idea of the comfort and reassurance it's given me. It seems a shame that the patients (awful word, sorry) seem to know more than the specialists though, that IS scary! Take Care, Z xx Patsy said:
Welcome to the world of neurologists LOL.. They hold our quality of life in their hands but show little caring.
I have always found more comfort and reassurance from nurses or even physio's.
The fact remains that this forum is the best place to learn all you need to know and how to cope with ataxia so very glad you found us.