Doctors V.patients

[neta]

Am I dreaming? There seems to be an enormous gap between what doctors and patients say re ataxia management. Very confusing. Exercise v. experimental medication? Faulty blood tests? Special diets v. "eat anything"? Progression v. no progression. Resting v. moving? Walk-in-the-park and cycling v. wheelchair use. What is the truth? N

[Fifa Volunteer]

Hello Neta

When I was first diagnosed my Doctor told me all that happens but he stressed we are all different and therefore affected differently. So I take each day as it comes. I still exercise and challenge 'the little grey cells'. I know the ataxia will win but not without a fight, I don't believe in making it easy

Take care

Fifa

[neta in reply to Fifa]

My dr said nothing and fisrt said it was sensory ataxia, whatever that is.

[silkwood]

I get confused too Neta.

[neta in reply to silkwood]

Yes Thanks

[Razzy]

My Doctor told me (this is a new doctor) he knew little about SCA 6 and his only knowledge of ataxia was temporary ataxia brought on in some patients after Major surgeries. He did however explain the age old adage " Use it or Lose it", he said excercise should be tried but not forced and I should stop when it became painful rather than just uncomfortable, My Ataxia neurologist Dr Marios at Sheffield Ataxia clinic also sent me for Physio, he said as we alter our stance for the gait we have when walking it can often be the cause of lower region back pain , I did find the Physio helpful as they helped me in so many ways , from walking so as not to put more strain on the lower back, as to computer games which tested and helped with hand eye coordination.

As Fifa says we all differ and our Ataxia affects each one of us in different ways, and excercise diet etc. is also dependant on any other underlying conditions we have , such as vertigo , COPD, heart problems, so only your Doctor and support medical team can recomend which course of action is best suited to you .

Good Luck with getting an answer that is best for you

have a good day

Helen

[neta in reply to Razzy]

Thanks Helen. I corresponded with Dr. Mario H of Sheffield for a while on the basis of the auto-immune factor in my ataxia and his interest in that connection I even thought of comming to see him in the UK but did not. .I think (I am no doctor) that the sort of ataxia post operation disappears on its own. I could be wrong. I have no pain, just constant swaying. I found the physio's to be quite useless and devised my own exercises. At the beginning, my neurologist played it all down, as if it was a sore throat. She didnt even say it was degenerative. I thought, no biggie. Even now, she hardly gives me time of day. Maybe this attitude is intentional. Neta

[cclive35]

unfortunately after 20 years nothing much has changed. the good thing is it seems finally aqaeness is getting stronger

[neta in reply to cclive35]

I don't think awareness is stronger. I find it annoying that every so often a "cure" is dangled before this public.

[cclive35 in reply to neta]

unfortunately there was no internet really back in the day, ipersonally had never heard of ataxia uk . im just glad that there is a little support that can be accessed its true though, its still a battle to have this ataxia thing taken seriously by doctors especially gps

[neta in reply to cclive35]

Its a bit strange because the condition is quite serious and debilitating. Actually, my GP in Jerusalem (he was trained in South Africa) did at least know what it is, do did my shrink and g But my gynecologist heard of it only vaguely.

[jurgen]

some time back, Heather wrote on doctors´

ignorance concerning sca

regards

[jurgen in reply to jurgen]

My advice would be to ask your GP for a referral to a local neurologist or alternatively ask for a referral to one of the Ataxia Accredited Centres in either London, Oxford, Sheffield or Newcastle-whichever is most convenient to you. The reason for the referral would be to try and ascertain the cause of your cerebellar ataxia. Really only when you know this could an explanation of why you have developed ataxia and whether you could pass it on to your children be given with any certainty. If it helps there are guidelines for both GPs and neurologists on the management of the ataxias which can be downloaded from the Ataxia UK website.

Harriet

[neta in reply to jurgen]

My sense is that the organizations are not so helpful. I dont know about the UK but in the USA, one has to lobby Congress to get any $$ out of them OR someone famous has to have it.Ideally, a politician or his wife.

[wibblywobbly]

My neurologist also seems to play my symptoms down to my face. I think he thinks that we can become too obsessed and think everything is to do with our Ataxia. So I think he uses this tactic on purpose.

[neta]

Thanks all. Yeah, I really cant tell what is going on. I guess its very variable. I guess we are all used to illnesses which have a beginning, middle and end with some medication in the middle not this open ended disease which seems to be a crap-shoot. Neta

[february]

I live in the US and was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause). It affects my gait/balance, dexterity, speech and swallowing. I have no idea why I have this, as no one in my family, as far back as I know has/had ataxia. Guess I'm just special...,ha! Seriously, I had all the blood tests, etc., and through a process of elimination, this is the type of ataxia the neuro team came up with. Anyway, I see a neurologist that specializes in ataxia and is also a researcher. He says to exercise for strength and balance. He also says to keep challenging myself with exercises and to be as active as safely possible. I attended physical therapy for a while and continue to do those exercises at home. I also walk on a treadmill, as I can hold on. I even "practice" writing/printing letters of the alphabet and read out load for speech. Exercise helps my mental health too, so it's a win-win! I rest when tired and try to eat as healthy as possible. I take some vitamins, a multi, as well as vitamin B-12 (for energy) and 600 mg (300 twice a day) of CoQ10. I take omega 3 caps. I originally started taking 300 mg of CoQ10 for muscle aches, as I take a statin drug for high cholesterol, although my neuro upped it to 600 mg. Of course, always check with your own neuro or doctor before taking anything, even over the counter things. As others have said, everyone is different in terms of types, degrees and symptoms of their ataxia. I won't give up or give in to this and agree with Razzy, use it or lose it! Ataxia is very challenging and frustrating, it takes HARD WORK to maintain, but keeping a positive outlook/attitude helps me! ;o)

[neta in reply to february]

I agree with the a"use it or lose it" approach. I think it is cruel to wave the "cure" flag when there is none

[wobblybee]

I said to the Neurologist, I'm worried I may have dementia. He replied, well there are lots of

different kinds of dementia. That was it, no further comment. The last time I saw him, he

was quite bright and breezy since I was feeling much better, because of anti depressants.

My case has been left open ended, I'm not monitored at all.

[neta]

Well, I guess they feel since there is not much to do for the patient then why bother with them. (Great approach, right?) In my case, they think/suspect an auto-immune factor at work (I think I mentioned this) so there is slightly more to be done. All the food stuff is, I think, bullshit. Yesterday, this very senior neurologist told me "eat everything you like and enjoy life." The only "eastern" thing I do is acupuncture. I do it mainly because the gal who does it is very sweet and maybe it helps somewhat. I don't know why you are not monitored. I think you have to manage your own case and not depend on anyone.. I don't think you have dementia. You seem very coherent. I see a dr (neuro) every 6 weeks..

[wobblybee in reply to neta]

I've had tests to check for a heart condition etc. and because they were negative I've

been left to my own devices unless any of my symptoms become 'worse'. It's possible

symptoms worsen when I overeat gluten/sugar. I've noticed a sort of cycle with my symptoms, specifically associated with over indulgence of certain foods.

Years ago I tried Acupuncture. At one time I saw a Cranial Osteopath, a Kinesologist,

a Chiropracter. At the moment I'm considering Reflexology.

[neta]

It seems like you explored many avenues. My cousin (whose father had a mysterious stiff neck for years) told me, "never give up. The solution can come from an unexpected source." It did in her father's case; from a friend in Australia. But dont spend too much money on ataxia. There is no cure per se from what I am told just exhortations to exercise alot. and to stay sane, if that is possible. Did any of the alternative approaches really help? Speaking of Australia, I discovered on the Internet that there is a whole village there with ataxics. Probably were exposed to some horrible chemical.

[wobblybee in reply to neta]

Unfortunately I can't say anything I've tried has helped, other than possibly cutting back

various foods. I do regret trying the Chiropracter. He jerked my neck sharply, I don't

think that did much good. Forgot, I also had an Endoscopy and Colonoscopy.

I go through phases with this. Either being calm,accepting and getting on as best I can or being angry, questioning and feeling robbed. Guess which today is?

I will add that in relation to questioning gluten, I come out in a rash regularly. A doctor

once suggested having fluid drawn from the rash to have it tested. Stay strong.

[neta]

Today I did alot of walking. I did some household chores and made dinner. I also had an Endoscopy, a horrible test two years ago. My throat hurt alot for two days. A (harmless) cyst was found near my liver, The whole thing was a waste. At the time they were looking for cancer which I dont have. Speaking of necks, I noticed that when I move my head sharply (i.e. to see if traffic is coming,) I get a wave of dizziness. Also, looking up and backward, produces the same reaction, I wonder if there is an exercise for that. I also have days when I think it's all over and days when I feel more hopeful.