Does anyone have the diagnosis of auto-immune ba... - Ataxia UK
Does anyone have the diagnosis of auto-immune based cerebellar ataxia? Neta
My CA is known to have been caused by a viral chest infection,a neuroligist once said there is an immune deficiency for this to have happened.
So what have you done about it? Thanks for answering btw. Neta
Nothing can be "done?" About it,only lots of exercise every day and striving to keep a positive attitude all the time,most people have got something wrong with them,most a lot wose than me.
I run in place for 1/2 an hour then do floor exercises. In my case, they (the doctors) decided that it was an autoimmune thing, this was based ona high "bad" antibody count and a "heavy" family history of auto-immune issues. My mother has alopecia areata, and my brother has Reynauds Phenomne but very mildly. I have a pretty bad attitude and I am taking IVIg infusions.
Best,
N
Glad you are exercising but I hope you can improve the attitude problem (this is of equal importance as exercise,I think).My GP thinks I became manic Deppressive because of the Ataxia,this is now controlled very well but at one time was more devastating than the Ataxia,so you be careful (I don't know what IVI infusions are).
Funny (not funny) because my shrink thinks that I am making matters worse and making myself feel far worse than I am, with my negative attitude which I am trying to shake. (But how to be happy about any of this?). I do take anti-depressants. I never "believed" in all this stuff but I guess it is real. I tend to feel more optimistic at night. Well, anyway, thanks for your kind attention. IVIg means intra-venous immunoglobulin. N
I think your shrink I probably right (I'm a poet and don't no it),I have made a practice of thinking of other people and taking a keen interestest in every thing that is going on outside my own tiny world.Good hobbies are also my salvation .
I will make a note of this and thanks
First it was thought that my own system might consider the cerebellum as a growth, like cancer, so my own immune system would attack it. To be sure that I didn't have any cancerous growth anyway, I was scanned for that.
Since that proved to be negative, the specialist at that time said that it must be auto immune.
I have always thought that the medical profession uses a diagnosis of auto immunity everytime when they don't know what it is. There are so many diseases that they say are all caused by auto immunity.
Hi Willowpuss
My CA could have been caused by a prolonged chest infection too.But I just guessing.I don't really know.I made that assumption because the symptoms came on after that.I may be wrong.Mother has Psoriasis and dad had Parkinsons so it could have been hereditary.
My MRI just showed Cerebellar Atrophy and all their tests so far havee been negative for an acquired Ataxia.The simple answer i think is they don't know with me and I have to remember there is more to life than just the physical.For years i got bound up with what caused it,now I just accept it is a Cerebellar Disease and I must make the best of it.
Thanks for your candid response, In my case, they found a high count of "bad" antibodies. So far, I have been treated with IVIg.
Best wishes,
Neta
I find c/a very depressing - but could you tell me - what is IVig ? and did it make a gooddiference to your ataxia?
best wishes from Charismatic
Dear Charismatic,
I also find it depressing and I cant understand people who say things like, "I try to be positive regardless.". Are they living in la-la land? It's hard to say whether the IVIg is helping me. . My doctors think yes, it has helped. They say I seem steadier. I walk without anything--although I do carry a handbag. Research has been pretty positive. N
Thanks for your reply - altho' I know the 'best of a bad deal' is the right approach
(as willowpuss advocates) however I strongly identify with what Neta says re....'are people living la-la la land?' What a descriptive way of summing up an ataxia sufferer's life!!
I think your accepting and then making the best of it is the best policy,it is what I have always done,in fact I treat it as a challenge and it is a part of my identity now.
As it was explained to me,the chest infection virus somehow got into my brain stem,this cased marked atrophy of the cerebellum (symptoms just like a stroke),evidently I am prone to this, I had the same thing happen when I was a child
( 7 years old ),although quite mild compared to the last time.
Hi Silkwood, I admire your attitude! I was diagnosed 10 years ago with ataxia. It took several years for me to "accept" my ataxia. I'll never give up or give in (I exercise for strength/balance, try to eat healthy and rest when I need to etc), I have just "accepted" my ataxia is here to stay! Not that it's been an easy journey! I guess I just try to embrace all the things I can still do, rather than focus on what I can't do anymore. Is it difficult to have this mind-set? Yes, it's still a work in progress...,ha! There's so many things I can't control about my ataxia. But, I can control my attitude, so I chose to as positive as possible! ;o)
I answered this but it vanished before I finished. In short, I dont accept anything. I am still hoping 4 a cure/miracle. In my case, I had high "bad" antibodies and high anti-Gad things, whatever that is. I am on once a month doses (infusions) of IVIg. Today I managed to take a walk in boots which have heels, medium size. Cant tell if I have mild case or if the IVIg helps. N
Hi
I have replied to Nerta several times. It must be nice to be able to even walk, let alone in high heels. I became ill with C.A. 6 years ago and althogh I had several I V I G infusions I found them of no use. Before my illness I was a very fit and healthy man and yes it is hard accepting the illness. I am now 67 years old and like others do not live in la-la land, but have a positive mental attitude and do believe that one day there will be a cure, however although my facilities are limited, I enjoy every day of life and live it to the fullest I can.
Sorry have to go, have a sky diving course to attend.
John
Hi John,
Sky Diving Course, I love it!
I'm co-ordinating a wedding with my daughter, it's in 2wks, and we didn't start planning
till after Christmas, because of her ill health. Will we kill each other first, or the
prospective mother in law?
It's certainly been a diversion from dwelling on Ataxia!
Regards
Beryl
First, It's Neta not Nerta. Second, I want to report that if my ex would read this , he would laugh. He said I always had a habit of telling optimistic people, the worst news. Ha, ha. I am now in NYC and I made a point of coming here in heels and alone. I found wobbling to the bathrooms on the moving plane to be a trick but II negotiated the airports pretty well. I think it is I who lives in la-la-land and you, are all pretty brave BUT TOO COMPLACENT. SO AM I!!!!!!. Look at the AIDS people.Look at the breast cancer groups!
I suspect the cure for this CA nightmare is in stem cell research. This is just a hunch. I got a long email from the USA govt about CA and IVIg (positive) and testing in general, which I will forward. Is a cure close or far?? I am not so computer savvy.
I think the wedding plans (I made two weddings for my 2 daughters) are torture, beautiful, silly, important, hilarious, emotional. Bridezillas, they call the brides here. Sky Diving. Wow! Best, N
I agree with your ex Neta. Cerabellar Ataxia is not a condition where everybody is the same. I'm sure there may be people like you who can walk on high heels who have CA but there will certainly be those who cannot. I'm not complacent just pleased that I am a positive minded person. I don't consider myself to be brave either just someone who responds positively to a neurological physical disfunction. I also don't live in la la land. I live in the real world and see all people who have CA as unique individuals who have different signs and symptoms to one another.
Dear Iain,
I hear you. I wish I can be more positive minded like you,It's just that I am so young and wham nobody expects this of me. I am so unequipped to deal with dysfunction (yet). I keep trying to "prove" to myself that I am ok so I do these "crazy" things. I dont know why this i s so hard for me and I am far from the most afflicted. I seem "normal" to most. No eye nystagmus. N
Hi Neta
Perhaps it would be good for you if you could join an Ataxia support group. That way you could share your experiences with others who are in a simmilar position as yourself. I don't have eye nystagmus either. My legs are most affected although my hands (epecially my left hand) can tremour when I move them.
Keep well. Iain
I dont have tremors but I have something that is making me sway profoundly when I stand, and slowing my speech. Extensive walking will cause me to stumble. Walking on an uneven surface, such as a beach, is a killer. Regarding speech: People dont hear what I feel. Anyway, there is no support group for ataxia in Israel, where I live. I dont know anyone like me. I have parents, age 88 and 90, and siblings-- all are fine. This morning I read in the NYTimes, that the head of the Bloomberg Foundation is about to invest millions in finding a "cure" for ALS primarily because his father and uncle died of it. Ataxia needs a face and name behind it. I will try to send out the American Federal response to my query.
What is ALS Neta? Shame there is no support groups where you live. Have you had an MRI scan of the brain that signifies 'Cerebellar Atrophy?' Did you also know that there are over 100 types of ataxia? Some are temporary but most are permanent and progressive.
Dear Iain,
ALS stands for some lethal, long-named, horrible illness known informally as Lou Gherig's Disease named after the famous American baseball player. I also think Stephen Hawkings, the British scientist, has it. Tony Judt, the UK writer and intellectual, just died of it. For some reason, Hawkings is still alive. It seems his case plateaued.
In Nov 2011, I had an MRI which showed some atrophy of the cerebellum. I know there are many types of ataxia. When I was first diagnosed it was with "sensory ataxia" whatever that is. But my constant complaining brought me to this new diagnosis. Drs. in both Israel and USA, have told me that my case is auto-immune induced hence my monthly dose/infusion of IVIg which stands for "intra-venous immuno globulin. There is a dr. in Sheffield, UK, who knows/writes about his.
Two years ago, when I was diagnosed, (after several years of ignoring the swaying)I thought this was a joke. B?ut slowly I find myself worsening. Is the IVIg "slowing" the process or doing nothing? Am I experiencing a psychological reaction? I don't know. I do have a high "bad" antibody count in my blood, and high anti-Gad levels, whatever that is. I have asked my drs. (who think its helping me) a million times for more scientific evidence, But they say it's not an exact science. I am thinking of starting a "group" here but have no clue how.
Sorry about all the past problems you have had Neta. I can only wish you luck to get (or at least feel) better.
Why not post the question,'How would I start a support group in Isriel?' on this site and see if you get a response. There is also the Ataxia UK helpline you could phone: 0845 644 0606. Hope this helps. Iain
Good idea. BTW, how do you cope with the bad weather? It is raining and snowing in NYC. Thanks for your continued support. N
We usually get poor weather in Scotland Neta. Were used to it!? Its raining just now and snow is forcast for later! If I don't get out in my mobility scooter tomorrow then I can always stay in and watch the rugby on tv.
Hi Neta
Sorry I spealt your name wrong. I too am also computer illiterate as well as a bad typist. At first I found C.A. hard to accept having previously being very active, but have now come to terms with it and I am not going to let it affect the rest of my life. There are people out there who are far worse off than me(us).
I think you have already started something by doing this blog. Don't think of the things you can't do, but what you can.
I wish you every success with your positive response of setting up an ataxian group in Isreal.
John
You misspelled my name-- that's okay. It's not even my real name. I also type slower (than I once did). Today I went to the Metropolitan Museum of Art to see the Matisse exhibit. I wished I didn't have ataxia! No one (and there were thousands of people milling about) seemed to have it. I used to love the museum now I hate it but I forced myself to go and walked home thru Central Park. I chatted with a man in the coffee shop who told me (by chance) that he had encephlelitis (inflammation of the brain, I think) when he was a child and now his hands shake because of the medication he once took. Tonight I fly back to Israel from NYC.
Neta (really Netty).
Hi Neta
You see you did something positive(different). You might have been one amongst thousands, but at least you were there and then to walk through Central Park. I have been to Central Park and it must be so different in the winter. And to meet someone else who had health problems. Now your one became two. Soon there will be many of us.
I know you are searching for results like all of us, but just think of the many friends you have gained by blogging Health Unlocked.
Best wishes and good luck in the future.
John
Well, I am back in Israel now. I never thought I would make it thru the airport with two heavy pieces of hand luggage... from now on it's travel light!!! I took a wheelchair in Newark. The stares bothered me. I only took it because |I had two heavy handbags. At some point in the Israeli terminal, I "stole" a wheelchair to put my heavy handbags and almost at customs (ver far)someone stopped me and angrily said, "this is only for disabled people!" I do like all the voices I have met on HU. Indeed friends. N
