As everyone will tell you very, very sincerely, so sorry to hear of your TM but so very, very glad that you found the list. It is the one place where you will find information, advice, and a lot of support and encouragement from people who know what you're talking about.
I leave it to others in the TMIC to respond to your questions about drug therapies and exascerbation of symptoms since A) I'm not taking any drugs and B) I'm still in the questioning stage myself. But one thing I will say is that most doctors need to be educated about TM and its symptoms. I don't believe that even the best, most compassionate, doctor can tell you where you can or can't have pain. I'm finding out that there is NO pat profile for TM, much as I'd like to be able to see one. :-)
Emogene, keep the chin up and like Ken wrote you, get lots of rest and keep the stress down (and it's soooo stressful when the symptoms are bad) where you can. Keep posting to the list because we'd love to hear how your progressing!
Jane D.
>>> "Richard & Emogene Edwards" <reland(AT)gj.net> 02/21 4:01 PM >>>
My name is Emogene and this is the first time I have written, after logging
on to the TMIC a short while back.
I was first diagnosed with TM in the cervical spinal cord in July 1998 after
3 weeks in the hospital. Initially my stomach had stopped functioning
properly, followed a little later by my bladder and bowels, and later yet by
my legs. Initially the docs were looking hard for cancer and any problems
related to diabetes, as I have been insulin dependent for 40 years.
Everything they did came up negative until several MRI's were run and the
problem found.
After the Solumedrol IV I was sent home with physical therapy arranged. I
recovered well over the next few weeks, and a follow-up MRI showed the
lesion and swelling to be almost gone. I was able to muddle by without the
catheter after about six weeks, bowel functioning returned with stomach
emptying although constipation continues to a degree, and gradually I
regained the use of my legs. By early September I was able to drive again
and went back to work part time, though I had good days and bad days.
In early October the bad days seemed to take over and then overnight I lost
the ability to stand up again. My husband took me to the ER at 3am and
another MRI showed a new lesion and swelling in a slightly different
position.
More Solumedrol and more rehab followed; the doctors didn't seem to know
what to do at this point. Was it TM or MS or something else; a neurosurgeon
said it was cancer and he needed to operate. We asked for a second opinion
and went down to the Mayo Clinic in Scottsdale, Arizona. They did some
Evoked Potential tests and another spinal tap. Everything came back
negative for MS, so the diagnosis is a recurring form of TM.
Mayo recommended Imuran, an immunosupprescent, and Prednisone phasing out as
the Imuran built up. Our local doctors didn't seem to want to start this
treatment plan, and I had another relapse over Thanksgiving weekend, going
from walking to unable to stand again. I don't know if it was a complete
relapse this time or just an exacerbation of the second one. I had the
third course of Solumedrol at home, and am now on the Imuran/Prednisone
treatment, and trying to rehab again.
I would be interested to hear from any of you that might be taking Imuran.
Also, has anyone seen a connection between TM and Hepatitis-B vaccinations?
I had a Hep-B vaccination about a year before all this happened.
I'm not sure about acupuncture either - my initial symptoms started the day
after I had acupuncture to help with a "frozen shoulder" I'd been suffering
with.
I have been having mild to severe back pain in the thoracic area, going
around to above my ribs in front. My Neurologist says it is NOT from TM
because my lesions have been in the cervical area. Your comments, please.
I think Drs. do not like to hear about pain.
Emogene