> Hi all:
>
> I had my initial TM attack on Labor Day Weekend. I have only written to the
> list a few times.
>
> I saw my primary care physician yesterday for the first time since seeing the
> neurologist and he basically brushed me off and discounted my symptoms. He
> has always been a great doctor before and I am so upset with him now. I
> can't understand why he would act like this toward me. When I told him about
> my difficulty walking, he said I needed to walk more for exercise. When I
> told him about the trembling in my arm, he ignored it. He also wanted to
> prescribe fenfluermine (spelling?), the part of Phen-Fen that is still on the
> market. I guess he feels all of my complaints will go away if I lose weight.
> I told him that I wasn't interested. He said he was surprised at the
> diagnosis of TM. I told him the neurologist talked to me about the
> possibility of having MS. He was quickly heading out the door, turned and
> frowned at me, then said "I know, I read his notes. It doesn't fit the
> pattern." And with that he was gone. I can't believe he dismissed me like
> that!
>
> The neurologist called me yesterday and I told him about my current concerns.
> He decided to schedule me for an MRI. He said we may have to go ahead and
> do a lumbar puncture after that. I really do want to find out exactly what
> is causing my problems. But, on the other hand I am afraid to go on. Does
> that even make sense?
>
> This is such a scary thing. How do you all cope?
>
> Sharon M.
Sharon:
My experience with MD's is that they couldn't diagnose TM on a bet. Even the
surgeons who
took both of my legs last year had to look it up. I'd tell the family physician
to take a walk. The
MRI will tell if you have MS or TM.
There has been significant discussion recently about the diagnosis. I was Dx'd in
1981 and all I can
do is share my experience. My neurologist just happened to be on call when I went
to the ER. He did a spinal tap and for some reason, I didn't feel it. Then he
ordered a mylogram (that's all thay had in the dark ages) and it revealed no
tumors or any other problem. I had a very bad experience with
the mylogram. Because of the muscle spasticity that I was having, I couldn't lay
flat thus I got one of those infamous headaches due to the dye. The next day he
began a pump IV of ACTH for five days, I don't remember how much but it took
about an hour a day. About 10 days later I could urinate and he sent me to PT the
next day (f unny stories about urinating). I stood up in the morning and walked a
little and in the afternoon I walked a on the parrallel bars. Two days later
after a little more parallel
bar walking he sent me home. Long stories. Fast forward to my anniversay date in
1983. They had
invented the CT scan and I had one. Results showed nothing wrong. I was still
having bowel and bladder limitations (as I have today), still walking some.By
1986 they had developed the MRI. I had one. At that time my neuro showed me my
MRI and one of someone who had MS. Even I could see the difference.. mine showed
absolutely nothing and the MS patient had very clear white spots on the cord and
on the brain. I tried PT in 83 and had the usual problem, the more active I was
the more pain I had. My neuro had said that I had a central pain syndrome (still
do) with a binding feeling at the T4 level. I've chatted with others and we named
it the "Merry Widow" or "Scarlet O'Hara" syndrome Also known as a gorilla hug.
Recently I had a lady say that she must have made the bra
god mad, because she had never experienced a bra band that tight. I tried a bone
scan in 1992 but I think it was for my left ankle. I lost both legs in 96 and
they weren't sure if it was poor circulation or what, (one AK and one BK).
So to all of the newbies, it may take some time to come up with the correct
diagnosis if they are not educated on TM. My Dr.felt that the ACTH helped to
reduce the inflammation thus there was less
damage. Differential diagnosis begins with the onset, it is typically acute, thus
in reality they call it
Acute Transverse Myelitis (ATM). Also, remember that what you are experiencing is
a compression of the spinal cord. The damage done, for me, took 18 months, until
I didn't see anymore improvement. I know that MRI technology has improved since
86 and so I'm trying to get the VA
to give me another one.
I hope this helps all of you with your Dx and if I can provide more info., let me
know.
Roger