Has anyone been treated with IVIg infusions for suspected autoimmune induced CA?

[neta]

[jomo50]

Although i dont recieve IVIg infusions for auto immune CA, I do have Iv infusions of rhitoxamaab every year and although this does not cure CA, it does makr the condition stable.

John

[neta in reply to jomo50]

Thanks for answering and your response was Interesting. I have "anti nuclear AB" antibodies (6.5) and my "anti GAD" results were high-ish. Why not IVIg?? What is the rhitoxamaab? I will mention your med to my dr. I am in Jerusalem. Also, what do you mean by stable?

[jomo50]

Hi Neta

Not sure what my anti bodies and anti Gad results are. Six years ago I had several treatments of ivig. I assume that is immuno globulin. Cells in my cerrubellam were dying and the doctors did not know the reason why. My condition was said to be very progressive and I started to lose abilities like, walking, talking and seeing very quickly/ The ivig was not having any effect whatsoever.Since I have been having rhitoxomab, this progression seems to have stopped, hence now stable. Not sure exactly what rhitoxomab is, but I have intro venous injections every year, you might want to look it up on the internet. Good luck, I hope this helps.

John

[neta in reply to jomo50]

Thanks John,

My CA is progessing much slower it sounds like and it has not affected my eyes, thank God, But my walking and talking is affected, as is my typing. The deficit is still quite subtle but to me it's changed my life a(for the worse). Hills are a kille, for example.. My doctors think it is helping me slowly. I can't say I see it, Thanks for answering all my questions. Be well

Neta

[jomo50]

Hi Neta

My pleasure. I hope your treatment is successful. Your problems apart from the eyesight sound a little like mine. I too have problems with hills or uneven ground. I forgot to say last time that I try and exercise as much as I can, I am a firm believer that this helps.

Good luck and best wishes.

John

[neta in reply to jomo50]

I wish there was/is a more "scientific" way of measuring the efficacy of the IVIg. I also hope the treatments are succesful and not harmful. I also exercise as much as I can. I run in place and do floor exercises. Is there something i am missing? This has been my first opportunity to discuss my problems. Till now I could find no one with the same thing and awareness is zero. Best Neta

[jurgen]

Hi,

I found out that the only remedy is exercise

Most docs want TO DO sth - and quite a few of us want them TO DO

sth.

Regards

[neta in reply to jurgen]

Hi Jurgen,

What is sth? I try to walk alot and exercise although when I sit life is easiest for me. What sort of exercises do you find most beneficial? Thanks for getting back to me. Neta

[jurgen in reply to neta]

Hi "Neta",

I´ve "googled" physio exercises for ataxia .

My therapist ( a very competent lady, I think) makes me do all exercises

mentioned:

exercises to improvie balance and postural reactions against external stimuli and gravitational changes ;

improve and increase postural stabilization ;

exercises for developing upper extremity functions ;

As I said I see her twice a week

I DON´T think there´s actually a remedy of SCA - so pills etc are no

good ( even bad because of their side effects)

I know of "SCApeople" who have been pushed into all sorts of

medications and operations by docs- invain.

Regards

Jurgen

[neta in reply to jurgen]

Dear Jurgen,

Thanks for you comments. I made most of my points in a long missive to someone on this site named Harriet. I hope you can see it. In short, IVIg is not a pill but an IV infusion which is given (to me) once a month. In addition, I try to stay active and do exercises. I am curious to know which excercises you do. My HMO physiotherist proved quite useless.

Best,

Neta

[HarryB Administrator]

Hi Neta and Jurgen

I hope you don't mind me butting in on your conversation. Please ignore me if I say something that you already know!

There are many different types and causes of ataxia and it sounds to me that the two of you have very different causes. If ataxia has an autoimmune cause then IgG infusions will be of benefit, as sounds to be the case with you Neta. However your ataxia Jurgen does not have an autoimmune cause and therefore you would not benefit from IgG therapy.

Even though there are many different causes which merit different treatments, the experiences of daily living with the symptom of ataxia are very similar. Exercise is extremely important for all people with ataxia, particularly keeping as active as possible, whatever the cause.

Jurgen, I know you already see a physiotherapist.

Neta, I would advise asking to be referred to a neurophysiotherapist. It sounds like you keep active and you are already doing specific exercises but it might be reassuring for you to make sure the exercises you are doing are the correct ones and be advised if there are any other exercises that you could do that would be of benefit. This is what the neurophysio did with me when I was seeing her and I found it hugely beneficial.

Harriet

[neta in reply to HarryB]

Dear Harriet,

Thanks for your comments. The physiotherapist I was assigned to came from my HMO. He was a nice guy but I am not sure how much he knew wbout ataxia (the occupational therapist knew zero--never heard of it) and grew frustrated with me. However he did recommend certain balance strengthening excersises(suchas moving my head from side to side with my eyes closed, without holding on, for five minutes; walking on a line; walking with my legs not too far apart... but I haven't found any magic bullet. Right now, he has recommended "hydrotherapy". I will look around for :neurophysiotherapists. But I haven't a clue how to find these people.

Regarding the IVIg, the treatments are once a month, for six hours, in a hospital out-patient "room". There is no pill but rather an IV infusion of immuno globulin. Again, my drs. see a subtle improvement because I am walking quickly and unaided; can speak and sign my name. But I have to come to a full stop before turning around; have to learn to get the phone slowly; and not talk too much.Compared to my previous life (running, jumping, super-active,gym) this is a joke. But my main dr. is the head of neurology in a very large hospital, and a dr. in New York, also a prof. of neurology at NYU,o seconded his opinion.

To help me "acccept" my fate (ugh), I have seen a shrink who gave me anti-anxiety and anti-depression pills. (I was never sick or depressed!!!!) Of course, I dont wish this upon anyone, but I feel that if a high profile person would have it, it might get more research funding or something dramatic might happen. Neta

[HarryB Administrator in reply to neta]

Dear neta

Thank you for your reply. I should've said I have a cerebellar ataxia of unknown cause. I was diagnosed with this over 20 years ago-I am 36 now. I have recently had to take early retirement on medical grounds and am now Chairman of Ataxia UK.

I can only tell you what exercises I do. I use a static pedal exerciser twice a day everyday and I do various exercises on an exercise ball as advised by a physiotherapist. Obviously these need to be done in as safe an environment as possible as the risk of falling off is very high. Although I walk unaided around my house (if holding onto walls and furniture does not constitute an aid!) I am not able to do so safely outdoors. I do try to keep as active as possible but I rely on others to help me walk outside so it depends when they are available.

I recently attended an International Ataxia Research Conference in London that was hosted by Ataxia UK and Ataxia Ireland. There were 13 countries represented, including America and Australia. Although I agree that it may be beneficial to research if a high profile person was diagnosed with ataxia (although, like you, I wouldn't wish this on anyone) I can assure you there is plenty of research into all of the Ataxias going on throughout the world.

Best Wishes

Harriet

[neta in reply to HarryB]

Thanks again for your response. I don't understand why all the research and good will hasnt budged the "condition". I am older than you and the on-set was when I was about 54. Since then, symptoms have become more pronouced but the whole thing is quite subtle. In general, I seem to be in better shape than you but I have no idea where the bottom is.It's like living with a terrorist in my body!!!! I will follow your exercise advice. I dont know anyone who remotely has ataxia. I am thinking of starting a group for Jews and Palestinians in Israel. Neta

[jurgen in reply to HarryB]

Hello Harry,

you write

***********************************

Although I walk unaided around my house (if holding onto walls and furniture does not constitute an aid!) I am not able to do so safely outdoors. I do try to keep as active as possible but I rely on others to help me walk outside so it depends when they are available.

************************************

Why don´t you use a rollator (walker) `?

Well, it took my physio quite a bit of talking (in fact she insisted on

my using a walker for some 6 or 7 months before her ex-teacher

gave in because he thought rollators were a sign of old age).

I now use an outdoor-rollator and two indoor-rollators - and feel

quite independent both outdoors and indoors.

Regards

Jurgen

[HarryB Administrator in reply to jurgen]

Hi Jurgen

I did try using a rollator but it didn't work for me unfortunately. I regularly kicked the wheels and tripped myself up.

Best Wishes

Harriet

[jomo50]

Hi Harriet,

It is good to hear from someone like you who seems to be positive

I too seem to have SCA the same as you and agree with everything you have said. I too walk inside unaided with the help of walls. I also like you believe in exercising.

I have had many IVig infusions, which I know did not help and I am now on tablets, plus a yearly intro venus injections of rhitoxomab, both which I know have helped, as I am now stable.

Good luck with ataxia UK. I know I have found your organizaton useful.

J

.

[HarryB Administrator in reply to jomo50]

Thank you Jomo50. I am delighted you have found Ataxia UK helpful and I hope you continue to do so!

Best Wishes

Harriet