Hi, Is Preexisting GQ1B untreatable?
AnonymousMay 22, 2007 at 2:50 pm
I posted a little about this in another thread. Here are the details:
I may have been exposed to whatever produced the GQ1B antibody as early as 1996. I’m not sure. I had my first incident of diplopia in 1999. I had the first loss of sensation in my legs in 2003. I was suspected for more than a year in having myasthenia gravis. Then the suspicion was on MS. In the past year I was tested for this GQ1B antibody and that test turned out positive. I seem to have no other testable problems, such as demylination, but I manifest leg pain and spams, a lack of balance and difficulty walking. I now use a cane.
It is only recently I have had anything close to a diagnosis (Miller Fisher Syndrome) and it is provisional. The doctor who asserted this has no treatment to offer, as if I could only qualify for IVg or other things if I had been tested for GQ1B years ago. So it seems I am stuck.
Am I? Does anyone know of circumstances like this that were successfully treated, either with conventional or alternative methods? Thanks.
AnonymousMay 23, 2007 at 10:49 am
I don’t understand why the Dr doesn’t order IVIG, it could very well help you.
Tell him that many people get IVIG years later and it has helped them to a degree.[/QUOTE]
I don’t know either. Right now, he’s gotten me to consult someone else for another opinion. But what the heck does a diagnosis mean when I can’t “graduate” to something to treat whatever it is?
I’ll relay what you say. What I saw on the internet suggests Miller Fisher is a treatable form of GBS but no one says what happens if you may have had the trigger for a while.
AnonymousMay 23, 2007 at 10:51 am
[QUOTE=angel2ndclass22699]Hi Lisa, Welcome to the Family. Were you tested for MG? what is GQ1B antibody test? Does your dr think you have cidp?[/QUOTE]
You mean “MG” = myasthenia gravis, rt? I’ve been tested for it several different ways — 2 different blood tests and a CT. I’ve also had more than 1 MRI and two different EMGs. Everything but the spinal tap, I guess. GQ1B is supposed to be an antibody that relates to CIDP and GBS. The doc mentioned both before the EMG results, but since those were “in normal range” he didn’t mention them again. He did mention Miller Fisher.
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