This is a question not meant to cause differences just stimulate a discussion.
Do you feel Ataxians who have tested positive for a specific Ataxia are treated different then Ataxians of unknown cause?
Hi,
This interests me greatly as for the last four or so years I have been having tests and discussions with medical professionals regarding my balance and other issues and have been told that I am definately affected by ataxia(s) and they are progressive and degenerative. Over the last four years, I have been told there is no real treatment or cure for ataxia but there is help / support if I ask for it. I have also been told that I can not have a 'full' or more detailed diagnosis or explanation of my ataxia and it is 'undiagnosed ataxia' (FA has been eliminated in my case and there is no other specific type showing as such).
I am 44 in a few days and I only state this for referrence as I am now showing the same sort of signs / symptoms as my farther started to show in his early forties. Dad has now got severe mobility issues and uses a wheelchair all day every day - but he is positive and happy enough!
Dad had a heart attack about a year ago but has recovered well. When in hospital for the heart attack, it was thought dad may also of had a stroke because he has speach problems and was hard to understand. As a family, we made it known that dad has had the speak problems for many years and this triggered an investigation into why this was so. When a visiting consultant (to dad in hospital) saw me walking with sticks and asked about my health, I reported that I have ataxia and the consultant asked if it was OK to check my medical records aginst those of my dad. I agreed without hesitation to allow my records to be viewed.
So! Why is all this connected to this thread? Thing is, dad had a visit with the neurology team recently and was told he has cerrebeller ataxia! A final and definate (?) diagnosis! However, I remain undiagnosed.
Some people find it hard to understand how I still have 'undiagnosed ataxia' when my dad has, in a relatively short time frame (from suspected ataxia to cerebeller ataxia), received a 'full' diagnosis.
Do you feel Ataxians who have tested positive for a specific Ataxia are treated different then Ataxians of unknown cause?
The simple answer is 'yes'.
It would be fairer though to say that people with a 'positive diagnosis' have, to some, much more credibility. Those with 'undiagnosed ataxia' like me will almost inevitably, run a gauntlet of disbelief and accusations of a type that infer a lack of credibility - through no fault of there own.
Either way folks, diagnosed or undiagnosed, try to stay positive.
Kindest regards,
m.
I posted the long post above as I thought it would give a good real life example relating to the question asked. I do agree that ataxia is ataxia and the diagnosis or type does not change that.
Stay well and keep safe all,
M.
John "JC" Colyer said:
Ataxia is Ataxia! the type or dagnosis doesn't change it.
Yes, I think, like just about everything else, that there is certain “validation” or something(?)…a certain “stamp of approval” (which sounds completely ridiculous when talking Ataxia) that it’s the official cause of why one’s doing what one is doing.
On the other hand, like you said, Ataxia is Ataxia. It is what it is…and pretty much blows whether having a specific type diagnosed or not.
Ultimately, I think that it’s what one chooses to do with that piece of paper or orally-delivered diagnosis…not the diagnosis itself.
I understand & accept the diagnosis of ataxia. Like Michael i dont have a piece of paper or blood test to prove it. I think the issue is more w/everybody around us. My in-laws are from Italy but know matter how many times i explain what i have they dont get it. Everytime somebody on T,V. has similar symptoms they either tell me about it or call me to watch. Even when they talk to people i hear them say the Drs. still dont know what i have. I think its just easier if u had proof. Even for disabilty claims.