I was diagnosed with Cerebellar atrophy in 2010 and the last time I had seen a Neurologist was in 2011. I was also a regular member of the West of Scotland Ataxia group which I found to be very interesting and helpful. My ataxia has progressed slowly since then and I now find that I accept my condition and just make the best of what I can do rather than what I cant. Am I wrong to suggest that I don't feel the need to continue seeing a Neurologist?
I now have ongoing chronic stomach/digestive problems which I'm not sure is ataxia related or not?. My doctor is aware of my ataxia and at the moment has prescribed me with medication to treat my stomach problems. I don't know exactly what I would gain from seeing a Neurologist again? I have also been tested for gluten intolerance which was negative (known to be a cause of ataxia). Newcastle is my the nearest Ataxia centre where transportation costs for me would be too much. Would like to know other views thanks.
Is the West of Scotland group still going Iain? I've tried email contact using the info on the ataxia site, but have never received a reply.
Is it worth continuing to see a neurologist? I'd say yes (but not if it is going to be an expensive trip for you). Even though your symptoms seem to have levelled out (?) and there would be no immediate benefit to yourself, I feel that it would be in your interest to maintain an ongoing relationship with a specific neurologist, so that if symptoms were to change, then you would be able to see a neurologist who was aware of your very own ataxia.
Where are you in West of Scotland? I'm down in Ayr, but see Dr. Alok Tyagi at Southern General in Glasgow. He knows his onions. I saw various other neurologists before seeing Dr. Tyagi - and all had different levels of knowledge. So now that I've found somebody who knows ataxia well, and who understands my specific symptoms, then I will do everything possible to maintain contact with him.
Maintaining a relationship with the same neurologist also has advantages for the neurologist. He/she can see your ataxia progressing, and learn from it. It might not do you any good, but the knowledge that they gain will help them diagnose and anticipate the problems in others.
For anyone reading this and thinking that everyone in the west of Scotland is called Iain - it's just a coincidence
i had had a colonoscopy and had MS but the MS was primary Progressive and I worked everyday and it was not apparent that I had it and people did not know. After the colonoscopy and Profanol was used to put me to sleep, I dropped to the floor one day all of a sudden, and that was 7 years ago and have not been able to walk since. It is devastating!! I do not have a formal diagnosis of the type. I feel the med. For the colonoscopy did this to my central nervous system!! I I tend to get a type diagnosed. I cannot do anything that requires waljingnervous. It puts a tremendous burden on my husband and took my quality of life away. It is so perplexing. I do have right sided pain. Leg and thigh . But I could near that! I cannot bear to not walk!! At one point after about two yrs. I just suddenly walked for about a couple of hrs. And then ataxia came back., anyone have any ideas?
I can't answer your question but really just want to ask when you saw the neurologist the first time what did they do? I have an appointment in December and am just curious as to what is going to happen.
They can blood type for genetic type and I understand they can tell you the definite type and if it is genetic or not. There is a new drug for walking that focuses on the area of brain for walking and I heard it does work. It is expensive but they will probably get it for you on a trial with a medical request from a dr. God bless you. My pain is horrible. I could not tolerate the elivil!! At all!!
It seems like such a long time ago, but from memory there were a lot of physical/non-medical investigations. Neurologist was watching me walk, and had me doing a lot of balance tests (walking heel-to-toe - like THAT was ever going to happen) - and watching the results.
And blood tests. Lots of samples were taken (maybe 4-6 at a time - they had to take one for every disease they were trying to discount).
In a way, this was quite good to know. Rather than trying to identify a specific ataxia to start with, they were trying to discount other possible causes. And as a result, although ataxia was eventually diagnosed, I know for sure that I don't have a lot of other rather nasty surprises waiting around the corner.
Pretty painless really. More talking than anything else.
It does get VERY frustrating at times. It felt like I was stuck in a "consultation-tests-results-another consultation..." loop for months - ans was getting no further forward. But the neurologists WERE homing in on the cause of the symptoms (just not the cause of the cause!).
I am wondering the same. I go to the Oxford clinic once a year. I feel as if I am going round in circles. On Thurs I have an appt with a local Neuro as I now think I need someone to head up the PT,OT,Speech and Lang and GP. Everyone is trying to help but i am concerned they are in the dark. It feels bitty.
Dear Lain25, I don't think it's "essential" that you see a neurologist, especially if it's a trip you cannot afford! I was diagnosed eleven years ago (had minor symptoms about eight years before diagnoses) and see my neurologist every six months. It makes me feel better to be monitored (I've had a CT scan every five years thus far), as my ataxia is and has progressed over the years. Also, I want to be up on any new developments that may come about. My neurologist also writes me a prescription for the yearly physical therapy (15 visits per year, as dictated by my insurance) that I do. I'm also in the process of hoping to have genetic "genome" testing and my neurologist is trying to make this happen (I've had genetic testing for the known dominant and recessive ataxia's, which was negative) The clinic I go to also has a speech pathologist, physical therapist and social worker that I also am able to see after my neurology appointment. Therefore, I get some other very helpful feed-back about my ataxia (like my slurred speech). Makes me feel "less alone" with this! Not a lot is known about ataxia (s), so maybe being seen will help someone else in the future. Those are a few of my reasons for seeing a neurologist, but, of course, it's an individual choice! My best to you...,;o)
Iain,I have just read your post and feel the same. I have an appointment in 2 weeks. I'll have my blood pressure and weight checked and then a quick chat with the neurologist who will then send me an appointment in another 12 months. The journey to hospital will take a hour each way ( if I can get someone to take me) plus the waiting time. Sorry to sound so miserable but I really don't know what to do.
my 18 yr old son had CA, diagnosed 2010. He seen a neurologist twice a year under pediatrics but did not get referred to one during his transition to adult services. I went to his GP and got a referral but the neurologist seems more interested in his epilepsy than his Ataxia, they keep telling him they are waiting on his pediatric notes, a year and half later still waiting. He does get seen at the Disability Rehabilitation centre at the Southern and waiting to see physio their about the shape of his feet. would like to say seeing a neurologist is advantageous but so far not sure. He attends the West of Scotland support group but his Ataxia is getting worse and he attends less often.
iain25 Top of the morning to you! I would recommend that you see your neurologist once a year, as long as you feel symptoms are mild. Then if something comes up, the neurologist could be called, and, at least, you have a Doctor that understands your particular case. Also, like with me, my neurologist picked up on some progression that I didn't notice, and sometimes, medicine can be prescribed that can help.
I last saw mine in Jan 2018, and have an app for dec 2018, as far as I am concerned, there is nothing to be done, so why waste there time, when someone else may need the app. I have SCA 7, diagnosed in 2014, since then only my walking and speech has really been affected. The local hospital speech therapist came a few weeks ago, but deemed me "near as normal as one can get", so she said she would see me in 2019. And Prof H at the Sheffield hospital who diagnosed me, suggested gene therapy, but I declined, as did not think it would help me
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