I really could use some advice re; a Dr. wanting to consider changing my
diagnosis based on one fact - that is I have had more than one exascerbation
seperated in time.
I was diagnosed last summer with TM- actually Acute Disseminating
Encephelemyelitis at Mayo in Minnisota, we flew up from Florida because we
read in U.S. News Report that they were the BEST for Neurological medicine.
My symptoms came on as a result of extreme stress with my job.
It was sudden, I woke with numbness from my chest down back and front. I was
put on steroids (oral, IV, oral ) immediately and it helped bring most of the
sensation back although I was left with L'Hermittes -that electrical buzzing
to my extremities, numbness and tingling that came and went but was never
gone completely from my hands and feet, nor was the leg weakness-spasticity,
but that came less often.
Baclofen was given to me for the spasticity and severe headaches were a side
effect of that. I went through physical therapy and was doing fairly well
until recently, I got the stomach flu and had a bad exaserbation which made
my legs very bad. I have had three exaserbations including the very first.
I have been through the MRI's which showed three distinct lesions in the
brain and one transverse lesion in the cervical spine. My spinal tap showed
proteins but NOT O bands (associated with MS), my evoked potential came back
good, my bowel and bladder has been normal and I am mobile but often tired
and have the numb hands and weak legs.
The Dr. I'm referring to is considering changing my Dx to MS based on this
last exaserbation, she hasn't seen me in two months, she just spoke with me
on the phone.
She also tells me that based on this one last exaserbation only, she is
"comfortable" with changing my diagnosis, never mind everything else is
points to TM. Oh I forgot to mention, this Dr. at Mayo specializes in M.S..
So maybe she is more comfortable with it because MS is her specialty?!
In addition to this, she tells me that sometimes your employers insurance
health and disability can drop you if your Dx changes!???
Do any of you know if this can happen? Do any of you know of any good
attorneys that I could consult with re: this matter here in Central FL? What
type of attorney is best suited to help with this type of situation?
Do any of you know of any good Dr.s familiar with the differences between TM
& MS and/or have successfully treated TM? Here in Central FL
I am desperate to get a "second" (actually fourth) opinion on this matter.
Please let me know of anyone you could suggest, maybe she can consult with
them.
Thanks MV