Posted by Sarah T. on August 14, 2005, at 17:43:39
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
I am so sorry to hear what a difficult time you have been going through. I had no idea you were struggling so because you are always so kind and helpful to others.
How long have these problems been going on?
You mentioned an elevated ANA. Is it very highly elevated or just a bit? Have you had a repeat ANA test? Did you have any other lab values out of the normal range?
How long has it been since you lost your sense of taste and smell? Are they completely gone or are those senses just drastically numbed right now? Did your taste and smell disappear suddenly or was it a gradual process?
It sounds as if you live in the DC area. Have you seen any specialists in other major cities? I wonder whether a place like the Mayo Clinic could help you. I think you'd probably have to be an inpatient there for a while, and you'd have a team of doctors from different specialties evaluating you. Since it appears as if you are having difficulties in multiple organ systems, the Mayo Clinic, or a place like it, might be of great help.
Have you seen a neurologist and a rheumatologist?
Have you had any brain scans, MRI's, CT scans, PET scans or SPECT scans? If so, did they shed any light on what's going on?
Please continue to let us know how you're doing. I wish I knew a doctor in your area who could help you.