hi everyone
I have a sister in law in the hospital right now with accute transverse myelitis. She had the exact same symptons as your mother but the symptons progressed more rapidly. I would suggest you do a search on transverse myelitis and you will see all the symptons. The treatment is with sterides and a product called IGG.An MRI should have shown this also a spinal tap is required. Good luck!!!
Update: They admitted my mom into the hospital today and plan to start plasma exchange immediately. They say she will get this every other day for 2 to 3 weeks. Does that sound logical?
One more thing about B-12. There are more sensitive tests than serum B-12; labs can test MMA and homocysteine levels. It's possible that she has a problem with the methylation cycle (not worth going into here, and I'm not a doctor). Short answer: If her injections are the common cyanocolabamin form of B-12, she might do better with methylcolabamin. You get can it at most health stores in 1000 mcg tablets that dissolve under the tongue. Talk to her doctors, and of course, don't leave any other stone unturned either.
Gosh! So glad to hear from you! You sort of disappeared yesterday afternoon and I was honestly WORRIED for you and your mom! WHEW! Did they explain their rationale for the treatment ( going on what Steve has to say about autoimmune disorder ) , i.e., did they explain what disease they suspected? Did the Mayo Clinic finally decide it's time for hospitalization? Or did you have to do it on your own? Good luck and we are relieved to hear from you.
OK, I am NOT a doctor--just my 2 cents because I've been doing a lot of reading after developing neuro problems of my own.
If they're doing plasmapherisis, it's because they suspect (or have found) your mother has made antibodies to parts of her own nervous sytem. It's called an autoimmune neuropathy. Theory is, an invading virus has a part that looks similar to a part of a neuron, so your body starts attacking its own neurons by mistake. (This is how GBS is supposed to work.) Plasma exchange is an accepted treatment that often works very well for such situations. In cases where it doesn't work, or simply as an alternative, doctors many administer intravenous immunoglobulin (IVIg) as another way of neutralizing your mom's bad antibodies. Both are top-of-the-line treatments that aim to stop or reverse the symptoms.
I would still speak to the docs about methylcolabamin b-12, just in case. It's pretty cheap, no doctor has ever suggested any side effects to me, and it might be good insurance just in case. People who actually do malabsorb B-12 end up having to take high amounts; I know folks who take between 1000 and 5000 mcg a day. That would make my head spin! but it seems to work for them. And yes, there are studies showing a theoretical benefit to the methyl- versus cyano- form.
We are trying to get an appointment at Shands(university of Florida) which is close to where she lives but have not been accepted yet. Someone also mentioned Acute Transverse Myelitis as a possible cause. Do you know anything about this disorder?