Same thing happened to me...just lost three posts one after the other last night. Must have been this website. I hope your venture into US insurance is good. US insurance is not as good as it used to be, and healthcare has gotten frighteningly expensive. Will you and your husband be covered by insurance at the new university? Is there an existing conditions exclusion? Things to find out before you get here I would think. I have been searching the internet about the autoimmune response as a cause of ataxia. Is there some hope in pursuing those leads in autoimmunity to find out if it is was one time deal, or if the autoimmune response is still doing damage or if the damage can be reversed? And don't give up hope...stem cell research could change everything. I wonder if your vision of what you think you will be like in the future may be far worse than the reality will be. My mom still looked like a million bucks even after she had had ataxia for more than a decade. It certainly is not something to be ashamed of. Neither is depression. Don't forget that the same chemical mis-wiring which caused your ataxia could also be causing your depression. You really CAN'T help how you are responding. I still find your shrink's attitude absolutely appalling. Get mad at him for the way he is treating you and ditch the guy...try to find a more compassionate (maybe a female) physician.
neta said:
I wrote a whole long response and it just vanished. Cant tell if its my computer of if the site so I will be more consice:
First, thanks to all who have reached out to me. Thanks!
My neuro's dont react gravely to me, maybe they have seen worse. The shrink takes his cues from them. He says my speech seems normal, walking only slightly off, that I am psychologically unable to deal with my condition because of a prior obsession with looks and attractiveness. I say bullshit but maybe I am wrong. I mean he is a psychiatrist of about 55.
I am sure that I am in some kind of denial but maybe that's not so bad given the fact thatthere is no cure anyway. It is true, I have protected my parents because they are older folks, Holocaust survivors and I am their baby, so to speak.
My husband (a prof) got a Spring appt. at a USA university which has an ataxia center. I plan on attending but will contact Dr. Gurevich anyway. I am American but gave up my American health insurance many years ago. Israel has a universal health care which is quite good and advanced. But now with his (mu husband's) appt. hopefully American insurance will be available to me again. I hoe they cover this Thanks again and good luck to us all. N
I had the same problem too a couple of times with disappearing posts. I noticed that both times, they were very long posts, so I thought that, may be, I had timed out ?
My learned response just vanished again so I will keep this brief Thanks to both of you!!! I am in the process now of checking out USA medical insurance. Charlie, youask good questions. Before I started with the IVIg, i had this procedue called lasmapheresis, where the blood is "cleaned" so to speak.I thinking its wishful thiking.. I didn't see any change from the:plasmapheresis.This is not a reversible thing, no. The prof. who is the head of neurology at a big hospital here, thinks the IVIg is slowing the process or even arresting it. The fact that I constantly think I am worse, is supposedly in my head. Not sure ths assessment is correct. Indeed, I look the same. as before. A NYU dr, said the Israeli dr-prof, is doing the right thing.
Have they done another MRI to confirm that it is not getting worse?
I just lost another response. I recomposed this in WORD so I wouldn’t lose it again.
I think it is important for you to think of this as two separate problems, the damage already done to the cerebellum and your anti-GAD immune problem which caused the original damage. It sounds like your immunologist has instituted a course of action to remedy the anti-GAD antibody problems (lasmapheresis, IGIg) and I definitely would continue with that. Were you also put on corticosteroid? I am impressed that you have found doctors who have already identified so much. There are ataxia patients who never find out this much about their condition. Also it sounds like the ataxia you have is not necessarily progressive. That means a lot in terms of your future. Just doing some research online for you has given me lots of hope that they can find in the future treatments like your IGIg which could help or even improve the problem in other ataxia patients, or at least stop the progress. Also check with your immunologist to make certain that the depression medication won’t in any way hinder the immunology treatments.
Do you have any other conditions (diabetes(late onset insulin dependent), gluten sensitivities, myasthenia gravis, any type of cancer, thyroid problems), things which would seem not to be related. These articles are kind of technical, but they address ataxia and anti-GAD antibodies.
My learned response just vanished again so I will keep this brief Thanks to both of you!!! I am in the process now of checking out USA medical insurance. Charlie, youask good questions. Before I started with the IVIg, i had this procedue called lasmapheresis, where the blood is "cleaned" so to speak.I thinking its wishful thiking.. I didn't see any change from the:plasmapheresis.This is not a reversible thing, no. The prof. who is the head of neurology at a big hospital here, thinks the IVIg is slowing the process or even arresting it. The fact that I constantly think I am worse, is supposedly in my head. Not sure ths assessment is correct. Indeed, I look the same. as before. A NYU dr, said the Israeli dr-prof, is doing the right thing.
You mentioned in a recent post that your parents were Holocaust survivors. I suppose it is safe to assume that you are Jewish.
I did not make the relationship right away, but I thought this morning about something I learned from a friend years ago, that Jewish people’s genetics have been studied extensively, and that there is a whole list of genetic auto immune disorders that the Jewish people can be tested for.
I found an article about this and one sentence struck me particularly. I am quoting it now : “…the same disease might be expressed differently across different groups, and the information ultimately could lead to more individualized and effective treatment.”
My text just vanished so here goes. First, thanks again so very much for addressing me and caring. I will answer you together.
No I do not have those other conditions at all. I am not gluten sensitive and eat everything except mayonaise (which I hate) and pork products and shell fish including lobster (against my faith). Yes, I am Jewish Cicina, but I never thought of doing anything genetic re auto immunity. Good idea. Jews, especially from Eastern Europe have been tested for diseases like Tay-Sach's and other terrible and fatal childhood illnesses, we should not know of them . I have been told many times that the CA in my case is not hereditary, and, in fact, no one has it in my family. But autoimmunity is another matter.... Thanks for the article in The Forward. I read it and it is very interesting.
Charlie, I think your points are very interesting. The doctors seem to usher me in and out of their offices before I can ask my million questions. Nevertheless, I am scheduled for an other MRI and more work blood work even though, it seems, it's hard to tell scientifically if the IVIg [stands for "intravenous immogloblin" and it is made up of donated plasma (by many people)] actually works. My prof-neuro thinks it does; I am not so sure. But my shrink says, "stop second guessing him and inventing new symptoms." Am I doing that? That's pretty nuts and not my style. But who knows? On the plus side: I manage to jog (in place) for 1/2 an hour daily--though it is getting harder. Also, my hives seem to be gone I and I manage to walk w/o a cane or any appliance. However, w alking long distances requires frequent breaks and water; turns are hard; late night, it's hard to get sentence out; in darkness, I can fall; stairs, both up and down, are challenging; dancing and heels are things of the past . Indeed, the CA is very much with me and becoming more apparent and part of my life.The prof-neuro say the IVIg works haphazardly. I am not sure about anything anymore. BTW, thanks so much for the fascinating links. Best, N
A condition cannot be ruled out because no family member ever had it or showed any sign of it.
A condition can be the result of a gene mutation. I have a rare heart problem caused by a mutation. I like to call myself a “mutant”
No one in my family has this condition, but it is hereditary and my children had a 50/50 chance of getting it. I have two children and sure enough, I passed on the gene to one of them. This child seems to be a carrier and has not shown any symptoms(knock on wood) however, the gene could be passed on through generations with or without the disease itself showing up. Unless people go through genetic testing, there is no way of knowing.
I was told once by a geneticist, that if everyone on this earth were to be tested for genetic problems, most would be proven to have a defective gene, although never showing any symptom… They are just carriers.
Anxious people probably would not do well with this type of knowledge.
Although it is true that knowledge is power, sometimes ignorance is bliss…
I think that sadness of loss, etc. can often be misrepresented by the “label” depression; however, I feel that it’s important to know the difference, to know when to seek help for it, etc.
Elizabeth Kubler-Ross had an epiphany with the five stages of grieving a loss; one of which is depression (1. Denial, 2. Anger, 3. Bargaining, 4. Depression, 5. Anger). I’m not sure, in this case, if sadness is called depression or not, but maybe this is what your doctor was referring to. You might want to clarify.
Also, here’s a video that I found which distinguishes the two.
