Have her immunoglobulins been tested? Did she have gastrointestinal or respiratory infection before onset? Has she been tested for porphyria? Polio?
That said, B-12 deficiency can indeed cause terrible symptoms. Make sure she is getting enough; a monthly shot for such a severe case? The most important thing is to get her to another neuromuscular expert asap.
Best of luck.
Hi sweetie. Gosh, sounds like your doctors may be stumped for the time being. Doctors are good detectives though and you still have tomorrow with them. I don't know where you live, but if she were my mother, I would put her in the car and drive her to a univerity hospital , even if it's in another state. ( The Mayo Clinic is a good place to be but if THEY are not able to dx, then you'll HAVE to go somewhere else. )In the meantime, the neurologist on this site has been answering questions every evening..he's close to this one.
Tomorrow, do ask if they ran a thyroid profile. Fcar has something there. My guess is that they did...it is pretty standard. Myasthenia appears to have been considered, as it was ruled out. Has your mom had a positive changes with the B-12 injections?
Let us all know how you are doing with all this..and remember, the neuro on here has been answering every night. Good luck.
check out guillian barre or CIDP
A P.S> That woman was also on IV antibiotics. Those were discontinued as well.
One little story from my nursing years....Had a patient present with complaints of severe abdominal pain, neuro symptoms galore.As she was being worked up in the hospital, she got progressively worse. She became bedridden, psychotic, had a foley catheter hooked up to empty her bladder, etc. We even had to put a nasogastric tube down to feed her. Other than pain meds, she was baffling everyone. Her family was distressed as she screamed out obscentities to them.
Her consults were many. Gastroenterology, psychiatry ( two psychiatrists told the family she was A) depressive psychotic and B) schizophrenic, nephrology, and finally a neurologist was called in. Guess what? She had a condition called Porphyria. And every time we gave her narcotics for pain, we were worsening her condition. The woman had been in our unit almost TWO months but within 48 hrs of the neuro consult ( he immediately discontinued all pain meds ), she walked out with her family, totally recovered. I gained a new and profound respect for neurology that day.
The moral of this story is...it may take awhile and some crazy diagnoses but answers are almost always found and often in the patient's favor. So keep hunting for them.
Hi again dear...If you are not satisfied with what you are told tomorrow at the Mayo clinic tell them you have no option but to continue your search for answers and that you will need all your mom's medical records ( to take to Shands ) including the MRI's,etc. I'd say to take her to Cleveland Clinic ( which is excellent also ) but I'm not sure your mother will be able to tolerate the airplane trip. You are the best judge of that. Keep us posted.