Waiting Diagnosis

[Zhez]

I've had the 'shakes' since a head injury nearly 40 years ago. Over the years I've had several 'episodes' where I walked into walls, fell up and down steps and stairs, knocked pans off the hob, dropped things......

I now have RA and need joint replacements which adds to everything else.

My latest problem is hand spasms...I sometimes can't get the fork to my mouth, I can't even sign my name anymore. Sometimes I can't get my fingers to go the keyboard either. I have carers, one of which suggested I may have Ataxia, she's had another client with it. I told the doctor and am now undergoing tests, etc. The frustration and embarrassment is sending me off the wall at the minute.

Has anyone got/has/had these symptoms? Does anyone know of anything that could help with had spasms? I don't want to sound a wimp, I'm not usually, but this all feels a bit scary now........

[silkwood]

My hands wobble so much now I drop food all over the place and on my glasses round my neck.

Don't get any pain though,

Hands are very much as you say.It is frustrating and embarassing isn't it.Nobody wants to take you anywhere as you make such a spectacle of yourself with food and liquids.

With my Ataxia I believe it is called intention tremors.Let me know if there is any medication as it is embarrassing.

[Zhez in reply to silkwood]

Thanks for replying Silkwood. I'm finding the whole thing really frustrating! 2 years ago I was an Adult Tutor for literacy and numeracy and I can't write a word now. I go for some test results on Wed, I'm hoping my Doc has been reading up. I told her about Ataxia UK and I know she's on the ball, bless her. At the moment I've taken to having soup in a large handled cup and finger food, toast, sandwiches etc but sometimes I choke on them so it ends up all over anyway. I've had the Speech Therapist round and she's shown me how to eat and drink properly and to make sure I swallow as apparently I haven't got the reflex anymore so I dribble a lot to add to the list.

Intention tremor.......is that when you know what you want to do but your hands take on a life of their own? My left hand isn't as bad as my right. Does it affects your writing?

All the best

[february]

I live in the US and was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause). I was diagnosed through the process of elimination (MRI of brain which showed atrophy in my cerebellum, A HALLMARK OF ATAXIA , muscle/nerve test, blood work, etc). I was diagnosed by a team of neurologists and have been seeing a neurologist that specializes in ataxia. My suggestion would be, if possible, see a neurologist that specializes in ataxia. The UK has great ataxia clinics and is very a-tuned to ataxia, in my opinion, more than the US. There are medications that can help with tremors, so I've heard. Mine are extremely mild and intermittent (mostly in my hands) as I have some pain in hands (they don't always cooperate and have a mind of their own...,ha!), but don't take any meds for it. My handwriting has deteriorated over the years, but I can do a little, albeit slowly. My ataxia affects my gait/balance (as a rule, I use a cane now), dexterity (writing/printing/fine motor skills), speech (slurred), and swallowing (coughing/choking). I've seen a speech therapist for hints on speech and swallowing, etc. I've also had physical therapy in the past, and am going to start again somewhere else next week, as it helps me.

Sorry to go on and on...,just trying to be helpful..., ;o)

[silkwood]

I see an Ataxia specialist here in the uk.Hands both wobble at certain angles.

Drop liquids and food.

No spasms, stiffness or swallowing problems yet,.

This is a recent thing ie over this past year.

[Zhez]

I had an episode of this, along with walking into walls, falling, tripping etc about 20 years ago and was tested for MS. The Consultant told me that he couldn't definitely say it was but definitely wouldn't say it wasn't. Since then I've had 'episodes' but since Christmas it's more or less constant. I shake like mad when I first wake up, then it settles down but occurs when I try to do certain things, not every time but more often than not. I find that when I'm emotional or angry my hands fly off in all directions, it would be comical if it weren't so embarrassing and undignified. I can't believe, having read through past blogs and questions on here, that none of my doctors have ever suggested Ataxia before! Even down to jaw snapping when I'm falling asleep, everything is here.

If I'd know about it before I would have insisted on being tested, I get first set of blood results on Wed and I'm going to ask (demand very nicely) to be referred to a neurologist.

You're all so brave on here, discussing symptoms with such candour. It's already helped me greatly just knowing that there's others out there feeling the same way.

THANKS!!!