"I don't know what is wrong or what to do" .. Reassuring!!

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Permalink Reply by Patsy on February 8, 2012 at 6:48am

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

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Permalink Reply by John "JC" Colyer on February 8, 2012 at 9:37am

We can not depend totally on the medical community, we must try to adapt our lives and live safe and try not to get injured because we are fighting Ataxia, Try not to let others ignorance discourage you.

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Permalink Reply by Patsy on February 8, 2012 at 9:47am

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.

Patsy

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Permalink Reply by Kati on February 8, 2012 at 9:53am

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)

http://www.pals.nhs.uk/cmsContentView.aspx?Itemid=944 

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). 

Good Luck!

Kati

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Permalink Reply by cristian ugarte on February 8, 2012 at 1:47pm

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

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ModeratorPermalink Reply by Alan Thomas on February 8, 2012 at 1:58pm

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.

Alan

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Permalink Reply by Patsy on February 8, 2012 at 2:22pm

i think it's also a 'budget' issue

patsy

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Permalink Reply by Nicolee on February 8, 2012 at 6:53pm

Cheers guys!! Been a lot of help there, and I am defo going to ask for a referal to Sheffield!! x

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Permalink Reply by Iain Stevenson on February 9, 2012 at 1:45pm

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. 

 

   

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Permalink Reply by Marie Turner on February 9, 2012 at 4:57pm

Hi Iain

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 .

Marie

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Permalink Reply by Patsy on February 10, 2012 at 4:09am

I wonder how many of us have CA with no known cause!  I will start a new subject for it.

Patsy :)

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Permalink Reply by Patsy on February 10, 2012 at 4:31am

If you want to start new discussion, click on +add at top of page and dont forget to click 'follow' at the bottom of any discussion page if you want to get email alerts.

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