new to this site.: I have used the fibromyalgia... - Ataxia UK

Ataxia UK

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new to this site.

siver52 profile image
9 Replies

I have used the fibromyalgia site for a long time. Poor balance can be a sign of fibro, but my balance has got progressively worse and my GP sent me to see a neurologist. He has diagnosed Ataxia. I am waiting for app for a brain scan. If that is all ok, how common are the other types of ataxia and are they all basically the same. Please excuse my ignorance.

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siver52 profile image
siver52
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9 Replies
tedjohnson profile image
tedjohnson

Hi silver52

Welcome to this site I find it very good as you can read the thoughts and ideas of 'fellow'

Ataxians Try and find out if there is a local Ataxia group near you as talking with others can be helpful The main thing is try to laugh a lot and keep cheerful I always think of the many other people in the world with far more difficult and possibly painful problems

Keep reading this site and very best wishes to you and your family Ted

wobblybee profile image
wobblybee

Hi!

When you get the appointment for the MRI try to take a favourite CD with you.

It does help to focus on something during the procedure, and you may as well

listen to to something you like!

I see that you have 3 lovely dogs, they must give you a lot of love and comfort.

My cat seems to sense when I need rest and takes full advantage of the

situation, making himself comfortable with me!

I don't know what type of Ataxia I have, actually it's quite common for that to be

the case. We all seem to have the same basic problems but they can differ

enormously in severity and progression.

Best wishes

Beryl

Fifa profile image
FifaVolunteer

Hello Silver52

Just wanted to say welcome. We are here to help, if we can we will.

There are numerous types of Ataxia. Sometimes they really can't tell what type you have. In these cases it is called idiopathic (a posh word for not known) I have idiopathic cerebellar ataxia. Despite having every test known to man they still don't know. Knowing really makes no difference, it changes nothing I have ataxia and that is that. Hey ho.

Take care

Fifa

pennypoop profile image
pennypoop

Hi, Ive just joined too. Ive got ataxia with no diagnosis, it don't matter really, I've had it for life so know no differnet, and I'm me whatever they name my probs. I

february profile image
february

Hi Slver52...,Welcome to you! You are in no way ignorant, as ataxia can be very confusing and overwhelming! I have Sporadic Cerebellar Ataxia (unknown cause), diagnosed 10 years ago. Ataxia shows (on MRI) atrophy in the cerebellum of the brain. The atrophy is responsible for incoordination of the body (in my case, problems with gait/balance, dexterity, speech and swallowing). There are many types/degrees of ataxia, some hereditary, some not, some genes identified, some not. As a rule, there's no ''cure" for ataxia, except some that are caused by certain vitamin deficiencies or gluten etc. I find exercise for strength and balance (safely) helps my ataxia the most. There are many reputable sites on the net that explain different ataxia's. There's also a helpful US site the National Ataxia Foundation (NAF) that you may want to visit for support/information. My best to you...,;o)

siver52 profile image
siver52

Thank you all for your replies. Basically I have to get my head around the fact that I am not going to be able to do a lot of the things I am used to doing regardless of result from MRI....ho hum. Might be on here a lot with daft questions.

HarryB profile image
HarryBAdministrator in reply to siver52

Hi Silver52

Welcome to the Ataxia UK site!

I have enclosed a link below for a publication by Ataxia UK which gives a brief introduction to ataxia. I hope you find it useful!

ataxia.org.uk/data/files/in...

No question is a daft question so ask away!

Best Wishes

Harriet

siver52 profile image
siver52 in reply to HarryB

Thank you HarryB, that was very helpful. I have a head full of questions, but at the moment I cant think straight. Just having a good old wallow in self pity, which I know I will get over.

Hi am new to this site to, so hello and welcome .My Gp diagonsed Ataxia yet no name but still waiting for my neurolgist to reffer me to a speacailist as he still thinks I have Functional spectrum disorder.Wish you well.

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