ataxia, as a way of life, ugh: Yesterday, I went... - Ataxia UK

Ataxia UK

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ataxia, as a way of life, ugh

neta profile image

Yesterday, I went to my neuro and it seems the IVIg has cleared up my weird antibody issue ( thought to bring on the ataxia), and I no longer get long-term hives (another symptom), but the ataxia remained and is advancing. My neuro thinks some antibodies are still around. They are going on that. Nevertheless, they asked me again to have another MRI and PET-CT tests , just in case they are wrong. This entire situation has made me very confused. Then the neuro says, "You are not so bad either way."

I wonder what he considers bad. I have come to the conclusion that CA is a forever thing and basically drs. are tapping in the dark.

17 Replies

Hi Neta😊

I was told initially 'your ataxia is mild'. It depends on whether you've diagnosed it, or you're coping with it🙄

Have you looked at 'acquired ataxia'?. 🤔xB

neta profile image
neta in reply to wobblybee

You are so right. It's very easy to be a big shot from a far or from your tweed swivel chair. I will chk a.a. Thanks, In health N

I reckon that you are pretty spot on with your conclusions Neta.

"Mild ataxia" B? I reckon I am in the very same boat, as you once were. It does seem to be as good as it can be (reading about other, expected, symptoms does make me realise how much worse it could be). It does continue to progress though, but very slowly.

Iain

neta profile image
neta in reply to Iain_100

Thanks Iain. I agree w u. best, N

Dear Neta, Nobody knows how ataxia effects people unless they actually have it (all the frustrations and challenges it brings). So easy for your neurologist to say "you're not so bad either way". I've heard the same message from my neurologist ever since I was diagnosed twelve years ago (I had very minor symptoms starting about eight years before diagnosis), although my ataxia has progressed and will keep progressing. So glad your IVIg treatment has cleared up your "weird antibody issues"! My best to you..., ;o)

neta profile image
neta in reply to february

You are so right February. Really? No one understands CA more than ataxians. "You look so well" "I never heard of this" "I think you are better" These are some of the reactions CA brings. So lately I just say I broke my leg.

IVIg is actually made in the USA and I, too, am happy it did something tangible as well as positive.

Ithink the worst thing about CA is the unknown--not knowing when you might worsen. Where is the end? I wish there was some way to tell..

Anyway thanks 4 your response.

In health, N

PGee profile image
PGee in reply to neta

Ahh, you say "I broke my leg.".... there is a joke going around for people with hearing impairments, if they want any sympathy, is to use a stick.   Sad, isn't it?   

The Neurologists probably don't know what to say, like those who have lost a loved one, sometimes, words seem so inadequate at such times.   But you do have HealthUnblocked to have a chat and see that others are.... what did you say, have also broken legs!!

neta profile image
neta in reply to PGee

LOL. I am still in NYC and Thanks PGee

neta profile image
neta in reply to neta

I have no idea what;s going on with this computer. Wants me to re answer? All I said was that you made me laugh. IN NYC, where I am freaking out my parents, kids and doormen.

Yes, I agree Neta, as I think the most difficult part of having ataxia is not knowing what will happen with it in the future. I fret about this the most! I so wish it would just stop progressing. I try to enjoy life and have a positive attitude, as I realize I have no control over the future anyway, but it's emotionally complicated the way I feel! My best to you... ;o)

I feel the same. We have to keep on trucking. XO N

Hi all, my friend has gone back to her original neurologist and he is now saying that it might not be Ataxia. They have not done any genetic testing though to exclude Genetic Ataxia.

I'm really confused now... The neurologist thinks is Functional Gait Disorder and has explained that this condition it's similar to a neurological condition like Ataxia. They are saying that this is explained by the body's reaction to extreme stress and depression and the body goes into lock down. Is this possible? Has any of you heard this before? Did you have genetic testing to establish is Ataxia?

Thanks, Charley

neta profile image
neta in reply to Charley_

Right... There is something called "Stiff Man's Syndrome".I have no idea if this is what you mean--- it is similar to ataxia. Wishing you and your friend all the best. N

Charley_ profile image
Charley_ in reply to neta

Hi Neta, they did not say anything about " Stiff's man syndrome ". They explained "Functional Gait Disorder" by saying that because of depression and severe sadness, the body can go into lockdown. It behaves the same way as Ataxia and it will be treated in the same way. It is very hard for us to believe that this can happen, but this is how the neurologist explained it. I repeat, they have not done any genetic testing or a DAT Scan to exclude Genetic Ataxia. It seems to me they are treating this disorder very superficial and I do not know where to turn to. Her MRI and blood tests are all normal.

Thanks

angelite profile image
angelite in reply to Charley_

Hi Charley,

This is the website you will be referred to if diagnosed with a 'functional' disorder :

neurosymptoms.org/

I was diagnosed as this 3 years ago, after a normal MRI , even with many  other positive test results and a suspicion of  Encephalitis ! Beware :  many people seem to end up under this umbrella term if their illness cannot be clearly defined, especially if scan is clear. After recent relapse, I am now awaiting tests for MS !  x

Well it sound like you got a somewhat positive answers because Stiff-Man Syndrome aint great.I do think that genetic testing for ataxia is helpful however. Does she have any other symptoms besides a strange gait? I would stick with one Dr. I dont know what country you are in but demand to be seen by a proper neuro if you havent. There is a psychological overlap in CA.There is also something called a difference of opinion.

I hate it when the Doc says I don’t have it so bad, and I feel like all my symptoms are getting worse! It would be nice if the Doc could be a little more supportive!

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