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Ataxia Support

A Strange Form of Cerebellar Ataxia

For the past 6/7 years I have thought I had CA which was officially diagnosed.However I am baffled by some of the symptoms.There is no-one in my support group who has the same.6 or so years ago everything was ok.I go to the Oxford Clinic and the Nero I see does't seem surprised at the symptoms but at the rapidity of degeneration.MSA has been suggested but I have been down that route several times-doesn't fit.I am now 55 and a hereditary link cannot be found.Symptoms at first were loss of balance and fluency of speech.Now this year the balance has gone so I have to use a wheelchair.

Speech is very difficult and the tremor has got worse so I have lost my independence with eating and looking after myself.Also my focus is dodgy.I am getting muscle weakness and finding it difficult to stand.Also have just started with dry skin on eyebrows and upper half of face

I am rigid with fear of falling over but still haave some movement and have bladder difficulties.

My question is how mmuch is Ataxia,how much age and how much hormones?

Do not have nystagmus,speech isstaccato rather slurred,no fatitgue or any cogitive decline,no pain and no swallowing difficulties..The tremo0r is action not Parkinson and although there is some crossover the movement(or lack of) is quite different.I'm confused.My MRI taken 5 years ago showed cerebellar atrophy.Should II ask for another MRI or will it be seen as a watste of money by the NHS.

Does ajnyone else have a combijnation of these symptoms???

Ask for another MRI , it’s only your health!(sarcastic)And your only 55! You have to know.

Dear Marie,

You mentioned that MSA was said to you at one point. The problem is that most people, including neuro specialists have no clue what MSA is or what symptoms it has. I just happen to know more than some about it and have to tell you that with your described symptoms I would not exclude it. Please, check into it some more and ask me if you have questions.

Hello, I read your message and it is quite normal to me. I am not your age but forty years old. I started having small issues dealing with Ataxia that dealt in driving my car like I was drunk whereas the police stopped me about three times a month for drinking and driving and I don’ drink, I developed a bad walking problem, I have Nystagmus and spatial awareness problems that makes me look like a perv. I developed Parkinson disease, I walk with a cane, I can go on and on, and on but I won’t- let’s say my life at 39 was baffling! Now at 40, I am scared to get a sore throat in the winter because it may kill me due to swallowing problems. I researched Spinocerebellar Ataxia Type 2 is what my family and I have but the only difference after research is the stress levels causes the ataxia to mutate inside you faster and it gets better over time. I found the best thing for my Ataxia is to be nothing and do nothing! I hope my insight helps. I now know from your experience that continuing to keep a medical journey of my daily activities will help someone else in the future.

KM, TM!

Dear Marie
I agree with Morlando
I am 53 with v similar symptom
Unfortunatly there is no cure
So why Torture yourself with medical tests to no avail?
Regards
Barney

My feeling - I have an unknown form of SCA - I've had all kinds of tests, and they are still unsure as to which one I have. If it has been 5 years since your last MRI, I would say get one - if for nothing else, just for peace of mind to see how fast it is progressing. My symptoms have gotten worse in the past little while, but not to the extent of needing a wheelchair (yet) - I'll probably be relying on a cane in the next while (especially with winter around the corner). Luckily, my wife is very understanding about things - she works in a medical field and I think that gives her a bit more insight seeing others that are definitely not faking it!

Good Luck!

Hello

Every Ataxia patient symptoms are different, although each patient needs to know the individual the outcomes in a different way. so that they can deal with it as best they can.

It is easy to put every symptom down to our Ataxia - indeed it maybe a big challenge to get the GP/Neuro. to investigate in to other avenues.

My Neuro. presrcibed Ragasilene (AZILECT) for a Tremor - this was only a"try it and see" but it worked and I still take it as it makes more fluidity to my mobility. - NOTE NOT A MEDICAL RECOMENDATION- seek medical advice **

I am glad you are being seen at the Oxford Ataxia clinic (although an Ataxia clinic it is no longer an accredited centre -but HEY its only a name and you get seen by the same people).

I must say that Marios at the Sheffield Ataxia Clinic asked me to have an updated MRI so we could compare with old MRI scans.

Keep well

Alan Wales Raredisease "Warrior"

Hi Marie,

I too am baffled by the symptoms, was diagnosed 3 yrs ago with CA. I have had 4 MRI's, 2 ordered by my Neuro 1 by my Chiropractor and 1 by my Pain Dr. Symptoms are: balance and gait are off (in wheelchair) slurred speech, Neuropathy in feet last but not least fine motor skills gone (cannot write)! I am seeing another Dr. in October, we'll see what he says. I'm sorry you are going thru this at such a young age, mine came on late I am now 66 soon to be 67. Keep me posted on how you are doing and I'll do the same.....Nancy

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I know there is no cure for CABarney. Iwas just wondeering if it was CA and something else on top.



BERNARD PURCE said:

Dear Marie
I agree with Morlando
I am 53 with v similar symptom
Unfortunatly there is no cure
So why Torture yourself with medical tests to no avail?
Regards
Barney

Thanks for all the responnses.I know my ataxia is incurable but I wondered if there was something else with it.

Hi some of your symptoms sound very like that of my dads. My dad started experiencing symptoms of ataxia seven years ago. Started with weakness in his legs, widened gait, balance problems, tremor (action), speech problems, he also has dry skin on the upper half of his face, worsening eyesight, sometimes bladder problems He now walks very rigidly with a walker in the house and is confined to a wheelchair outside. Again no family history of this condition, all genetic testing to date negative. It is very frustrating that so many years down the line, we are no further forward with a definitive diagnosis, however we do live with the knowledge that there is a probability of this being an inherited condition. my dad also had a second opinion from another Ataxia specialist who said if he hadn't known my dads background and clinical testing which had been carried out, he would have thought primary progressive MS. I am a great advocate of making sure that all the testing that can be done is being done, each individual is unique and who knows what a test result may throw up.

good luck

Tricia

Marie,

As I said before, your symptoms include bladder problems. That is an autonomic system problem. That together with your balance problems, swallowing problems, and speach, suggests MSA-C to me. That is the cerebellar version of MSA. Many neurologists believe that MSA has to have cognitive problems for identification. The problem is that the opposite is true: If there is cognitive impairement then it is unlikely to be MSA. I saw a doctor (the chief of Gerontology at this hospital) who told me I could not have MSA because there would be mental issues. As soon as he said that I recognized him as a charlatan. Therefore, if cognition is why you think it does not fit, try it again. I am unlikely to have MSA because my problems started in childhood - different reason than yours.

Hi all! This is me again but much older now. I was diagnosed with Ataxia for almost 7 years. My mother has it too and she took it further and got the special testing that tells you which one out of maybe 35. Well, I have SCA2 the two is for those who don’t know that SCA2 is Spinocerebellar Ataxia with dementia. I look at it like this so what I forget. So what I get upset quicker now that dementia is really working in me, so call the police. It ain’t nothing I can do about it so sue me!

RIP Marie… sad news on FB from Marie’s daughter. I received this message:
Hi everyone. My name is bethan, I am Marie’s daughter. i am very sad to tell you all that my mum passed away this morning. She was very peaceful and has been surrounded by family and friends throughout the last few weeks and days. She was so fond of you and we as a family thank you for all of your advice and support. X

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For anyone who wonders who Patsy is referring to…

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