First of all, welcome to this list, and I am sorry for all you have been through. I am far from an expert on TM (although I have had it for 3 1/2 years, I was only diagnosed 8/98), so I do not feel qualified to give you any specific advice re your doctors. However, I just wanted to let you know you are not alone. And you are right about some doctors not wanting to hear about pain. I think it is because it is often not something they can "fix"...and when doctors can't "fix" it, they get
frustrated...and often take it out on us. Sometimes doctors can be the kings of Denial! I would say to just keep at it. Keep asking for answers and keep believing in yourself. There are good doctors out there (and some can be trained LOL)
Please take care,
Mykella
Jane Dahl wrote:
> Dear Emogene;
>
> 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