Thank to both of you for responding. We have scheduled an appointment with Dr. Hutton at Baylor College for July. I am hoping he will order more tests to rule out other causes.
I am also trying to get a consultation with a doctor in India. But TM is so rare over there that the ones I talked to did not even hear about it or have not heard that a parasite can cause it. But still I keep looking.
Hi. My diagnosis thus far is also transverse myelitis. My IgG was not elevated, and my spinal tap didn't have any OGBs. I did have more leukocytes in the spinal fluid, with, I believe, a lot of T cells--showing the doctor that there was inflammation. This was a couple of months after I had the weird numbness and pins and needles that started us looking at things, and it had already begun to calm down.
I do have at least two lesions on my cervical spine. I never had any steroid treatments. I've been waiting almost 5 years for the second attack, but no new lesions have appeared on my MRIs, and my increased bladder and bowel problems haven't counted as a second attack. I'm switching neuros, and I have an appointment with the new one in December, so we'll see what changes then, if anyting.
So, I guess what I'm saying is that with TM, the indications you get from the LP are even less useful than they are with MS.
The prior attack seems a lot more important than the lab stuff, in my humble and self-educated opinion. Bestr wishes.
You might try to find a tropical medicine expert or a doctor familiar with parasites and bacterial infections in India to check him out. That might take a lot of phone calls. There are all kinds of bugs in other parts of the world that doctors here don't recognize or even know about.
Perhaps your husband's doctor would be willing to prescribe him some anti-parisitic medicine to see if it helps. They don't usually like to experiment like that, but given the severity of his attacks, the risk of an anti-parasite drug seems mild compared to the risk of paralysis.