"Unfortunately this condition (referring to CA) cannot always be treated successfully.... There are not any newer or experimental treatments for this condition that i am aware of. "
Good luck,
Name and title _______________________
Stanford University Medical Center
Neurology and Neurological Sciences, Movement Disorders
Yes there are,Neta! Ion Channels,Drugs,stem cells...These SCA's are now out in the public arena and not in some doctors filing cabinet collecting dust..I.for one have positive vibes about this :-)< Ozzy
Hope you are right, O.
Right.
John "JC" Colyer said:
no change but we keep trying our best at our pace
I dont have SCA. Rather auto-immune induced CA. have had plasmapherisis and IVIg. Nothing has helped. I have bad antibodies floating around and to date, no cancer. N
Ozzy said:
Yes there are,Neta! Ion Channels,Drugs,stem cells...These SCA's are now out in the public arena and not in some doctors filing cabinet collecting dust..I.for one have positive vibes about this :-)< Ozzy
HaHa ...I recently went to another "famous university " Ataxia / Movement disorder clinic ..
I waited 4 months for my appointment , ( originally it was a 12 month wait ) . I had a short exam , touched my nose and toes for the doc. We googled some of my symptoms to look up causes . He suggested another spine tap ( i have had 5 so far ) and some botox injections in my back . They had not had time to look at my chart or the records I had sent in , but promised to by future visits .
He also suggested some PT and a swallow test , ( promptly denied by insurance ) I followed up on having him look at my records , but the packet has been misplaced , so I am working on getting more copies to them .
Doctor there says I do not need any follow up visits yet , they did suggest I contact a Neurologist . ????
In Summary : Dont expect too much ,.................
Where was the famous university clinic? I'm going to one in March and I hope it's not the one you went to...
Searcher said:
HaHa ...I recently went to another "famous university " Ataxia / Movement disorder clinic ..
I waited 4 months for my appointment , ( originally it was a 12 month wait ) . I had a short exam , touched my nose and toes for the doc. We googled some of my symptoms to look up causes . He suggested another spine tap ( i have had 5 so far ) and some botox injections in my back . They had not had time to look at my chart or the records I had sent in , but promised to by future visits .
He also suggested some PT and a swallow test , ( promptly denied by insurance ) I followed up on having him look at my records , but the packet has been misplaced , so I am working on getting more copies to them .
Doctor there says I do not need any follow up visits yet , they did suggest I contact a Neurologist . ????
In Summary : Dont expect too much ,.................
yale
runner said:
Where was the famous university clinic? I'm going to one in March and I hope it's not the one you went to...
Searcher said:HaHa ...I recently went to another "famous university " Ataxia / Movement disorder clinic ..
I waited 4 months for my appointment , ( originally it was a 12 month wait ) . I had a short exam , touched my nose and toes for the doc. We googled some of my symptoms to look up causes . He suggested another spine tap ( i have had 5 so far ) and some botox injections in my back . They had not had time to look at my chart or the records I had sent in , but promised to by future visits .
He also suggested some PT and a swallow test , ( promptly denied by insurance ) I followed up on having him look at my records , but the packet has been misplaced , so I am working on getting more copies to them .
Doctor there says I do not need any follow up visits yet , they did suggest I contact a Neurologist . ????
In Summary : Dont expect too much ,.................
Stanford. But I think they are all the same more or less. I went to Johns Hopkins, 6,000 miles from where I live, and could not even get an appointment. No one would bend the rules for me. In NYC, I was seen quickly at Columbia Presbyterian and NYU and was told that big city drs. have much more competition and would never tell a patient, "see me in 6 months."
runner said:
Where was the famous university clinic? I'm going to one in March and I hope it's not the one you went to...
Searcher said:HaHa ...I recently went to another "famous university " Ataxia / Movement disorder clinic ..
I waited 4 months for my appointment , ( originally it was a 12 month wait ) . I had a short exam , touched my nose and toes for the doc. We googled some of my symptoms to look up causes . He suggested another spine tap ( i have had 5 so far ) and some botox injections in my back . They had not had time to look at my chart or the records I had sent in , but promised to by future visits .
He also suggested some PT and a swallow test , ( promptly denied by insurance ) I followed up on having him look at my records , but the packet has been misplaced , so I am working on getting more copies to them .
Doctor there says I do not need any follow up visits yet , they did suggest I contact a Neurologist . ????
In Summary : Dont expect too much ,.................
Your comment is not terribly encouraging. People who did not do their work and/or never bothered to tell you crucial things. I am hardly surprised.
John "JC" Colyer said:
I went to my primary care DR, I go every 3 months for a blood work check, he receieved the MRI report from my 1st MRI in 2007, a couple words were in the report he did not know meaning, he googled them, seems tech who read films said it looks like a birth defect, my father said I was born with orange size mass on the back base of my skull where cerebellum is, I have auto immmune disease in my family which attacked my cerebelllum cause it was weak. Neurologist in 2007 never told me it was in report ,just said he could do nothing for me, I have been clumsy and my speeech was off my whole life, now people around me then said they noticed, they never told me before, I guess I was clueless, typing with 1 finger stinks!
thanks, for the comment on your Auto Immune, have never heard of this, how does get diagnose,,, my MRI are not show anything, though it its believed i have some kind of Ataxia, I do have Mixed connective disease, Lupus being one of them, though no symptom of Lupus,,, lots of Neurological symptoms,, I see my GP to day and will bring the Auto Immune to her attention , thanks
Mach6
neta said:
I dont have SCA. Rather auto-immune induced CA. have had plasmapherisis and IVIg. Nothing has helped. I have bad antibodies floating around and to date, no cancer. N
Ozzy said:Yes there are,Neta! Ion Channels,Drugs,stem cells...These SCA's are now out in the public arena and not in some doctors filing cabinet collecting dust..I.for one have positive vibes about this :-)< Ozzy
Hey there Mach6
The autoimmune diagnosis came after many months of searching. Nobody in my family, not even my wider family has ataxia. However I do have abnormally high levels of something called ANA's (Adult Nuclear Antibodies) and anti-GAD's and almost everyone in my immediate family has autoimmune issues. (I also developed psoriasis of the scalp, as did my brother, a very auto immune condition. So my body is creating these antibodies for some reason. First, we looked (and are still looking) for a tumor. So far, I have none. In a small number of cases, cancer makes an appearance this way. Next, my neurologist said that there's no point in wasting time, finding what triggered the ataxia, just let's mask the antibodies themselves because we think that they are attacking my cerebellum. So Ive had plasmapherisis (plasma exchange) and IVIg treatments.(neither hurts). I had no side effects but nothing has worked as far as I could tell.Now I am considering using a stronger drug to eradicate these antibodies.Its called rimuxitub or something like that. I hope/assume the autoimmune diagnosis is correct if I am going to such lengths to combat it. . All in all drs keep telling me that I have a mild case but I dont think its mild at all. And good luck to you!!!
Mach6 said:
thanks, for the comment on your Auto Immune, have never heard of this, how does get diagnose,,, my MRI are not show anything, though it its believed i have some kind of Ataxia, I do have Mixed connective disease, Lupus being one of them, though no symptom of Lupus,,, lots of Neurological symptoms,, I see my GP to day and will bring the Auto Immune to her attention , thanks
Mach6
neta said:I dont have SCA. Rather auto-immune induced CA. have had plasmapherisis and IVIg. Nothing has helped. I have bad antibodies floating around and to date, no cancer. NOzzy said:
Yes there are,Neta! Ion Channels,Drugs,stem cells...These SCA's are now out in the public arena and not in some doctors filing cabinet collecting dust..I.for one have positive vibes about this :-)< Ozzy