The quote is from my neurologist! I saw him Monday and was hoping for a diagnosis and was very disappointed with the knowledge that he is as clueless as me as to what is causing my Ataxic State.
I am aware I am not the first to face this hurdle, but I am looking for a little support and guidance in what I can do or who else I can talk to in regards to the matter of my condition (whatever it may actually be). Mainly because EVERYONE I have enquired for advice, support, benefit or housing from has told me to return when I get a diagnosis. Which has resulted in me being placed onto Jobseekers Allowance even though I have applied for the ESA and been given a sick note, and my husband suffers some mental health issues has had his benefits discontinued because "if he is a full time carer he is in the capacity to work full time". So we are facing hardships due to the condition and as knock on effects a no one seems to know how or why they should help ...
I had neurologist like that until I got my GP to refer me to Ataxia Clinic in London.
Have you tried getting referral to Accredited Ataxia Centre ?
Take care, Patsy
well said JC - Typical example of that was having inserts made for my shoes but no advice or help in finding shoes they would fit in. Chiropody explained how they were causing corns on my toes and neuro physio said I would be able to walk more safely WITHOUT them.
I now use memory foam insoles.
I had problems getting a diagnosis it took ages, and just cos the first neuro treated me like it was in my head cos he couldn't find anything! .. my difficulty with balance and walking came on suddenly I was admitted as an emergency and they were originally looking for MS on my MRI.
I even asked in writing, as I had read that Chronic Hypothyroidism ( I was born with mine not working and was 33 at the time this happened) can cause cerebellar Ataxia, he even admitted it was possible but because it was so rare, it was therefore unlikely!. Needless to say I asked for a second opinion and researched and chose my second neurologist then wrote to hospital complaints board demanding a second opinion with my chosen neurologist!
After testing for a number of other things they, not surprisingly (to me) concluded that I had 'Ataxia due to chronic hypothyroidism!... this was a few years later and I had reached wheelchair stage by the time they made this official so I could be seen by a physiotherapist!! .. I had tried to be seen before.. I'd asked for a speech therpaist who very expertly told me i just 'sounded deaf'! (I've been since age 16 but wasn't born deaf and didn't 'sound deaf' prior to the ataxia symptoms starting!)
I would keep going until you find someone who will listen to you and believe you.. try writing to PALS. (Patient Advocacy and Liaison Service)
Click on the link where it says 'Make a complaint' and explain that you require referral to a specialist as you cannot receive financial help until you have a diagnosis. Ask for referral for the London or Sheffield Ataxia Clinics (whichever you are nearest to).
ALL SCA 1 to 200 has no treatment at all.. !!! Neurologist of the world: NOTHING TO DO OR PREVENT.
(for Neurophatic symtoms) LYRICA / PREGABALINE up to 600 mg+ DULOXETINE 60mg.
THATS IT FOLKS
good information from excellent friends.
you can insist your GP/Neurologist, refers you to another Neurologist.
Addmittedly they DO NOT like doing this (as it looks as thier diagnosis maybe incorrect) but they have to respect your request.
i think it's also a 'budget' issue
Cheers guys!! Been a lot of help there, and I am defo going to ask for a referal to Sheffield!! x
You mention in your discussion Nicolee about aquiring advice and support and then being told to return whenever you get a diagnosis. I think that this is a very disgraceful and ignorant thing to say. A piece of nonsence. My Neurologist on my first visit told me that I would find it very difficult to recieve disability benefits if I did not have a definitive diagnosis. I then went back to my doctor who said that this was not true. The Neurologists letter stated that I have Atrophy of the Cerebellum and my doctor stated that this is a true diagnosis (she descrbed it as being Cerebellar Ataxia). Ataxia whether there is cerebellum shrinkage or not in my opinion should still be classified as a disabling condition and should be taken seriously. I guess my Neurologist was just baffled because after many blood tests he could not find a cause. All my tests have been negative.
Katie was spot on. Keep going until you find someone who will listen and believe you.
Have got c a too and don't know what caused it? Racking my brains to see if I did something different 4 years ago .Have a shrunken cerebellum but don't know why.The Neurogists don;t give it a SCA do they-very frusrtating to have half a label but good for getting services.My letters usually say cerebellar degenerationbut cause unknown>makes you keep thinking there is something we can do instead of accepting it .It took me 2 years to get a diagnosis.One Neurologist said it was stress so I demanded a second opnion.Dr wasn't happy but did it anyway.Definitely progressive as speech gone now as well .
I wonder how many of us have CA with no known cause! I will start a new subject for it.
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