Fw: TM or MS?
Deborah Capen (dcapen(AT)ivic.net)
Mon, 16 Jun 1997 13:59:24 -0700
From: sjhanan(AT)e-z.net
To: dcapen(AT)ivic.net
Subject: Re: TM or MS?
Date: Monday, June 16, 1997 11:47 AM
Deborah Capen wrote:
>
> After reading Aurore's description, which is an excellent phrasing to
> describe TM, I might add, that, when I was struck, and paralyzed from the
> waist down in a matter of 1 1/2 hours, (now it has been almost six months),
> the first thing that occurred to me was the fact that I had taken my car
> summersaulting in the desert exactly two weeks prior to that, and came out
> "uninjured". (The car was flattened like a pancake, except for the
> driver's side, which was only slightly flattened. ((Yes, my guardian angel
> was with me, Thank God)) I was upside-down, undid my seat belt, crawled
> out, got a little scratch on the palm of my hand from the broken glass). I
> think my husband was more traumatized by it than me, since he was
> following, and saw the whole thing. The paramedics at the scene had told me
> that sometimes injuries crop up as long as a month later, to "immediately"
> go to the hospital if I had any pain.
>
> So, of course, that is the first thing that I mentioned in the E.R. The
> first thing the E.R. physicians told me back was, "The symptoms you are
> having have nothing to do with your accident, it is neurological in nature,
> we want to send you to the Neurological Trauma Hospital downtown". They
> were actually wise enough to know that it was beyond their knowledge, and
> they were not going to second guess as to what was happening.
>
> I was still positive the accident was involved, so in the ambulance, I told
> the EMT's my story, when I arrived at the second hospital, I repeated the
> same story, every single doctor that examined me told me exactly the same
> thing. I did not have "all" of the symptoms for them to believe that my
> symptoms were accident related.
>
> I was admitted with "possible Guillian-Barre" symptoms. Only after three
> times in the MRI tube and the blood tests to rule out GB,and EMG's spinal
> tap, etc, did they come up with the TM diagnosis. I was still convinced
> that the accident was involved somehow. (What other explanation for an
> otherwise "totally healthy" person to go paralyzed unexpectedly?)
>
> Only after speaking with Deanne Gilmur, who has founded the Transverse
> Myelitis Association, and explaining the entire story to her, did I finally
> believe the doctors were correct. I had told her that I had NO flu, was
> positive about that, since my husband had gotten the flu, and I was sure I
> would get it, but then didn't. However, the reason I had my accident, was
> I was not feeling "100%", kind of queasy while driving the 4-hour drive to
> Arizona, and fell asleep while driving (at 11:30 in the morning after
> stopping for breakfast one hour prior to crashing). Deanne told me that I
> DID have the flu, that it comes in different severities. I always thought
> the "flu" was 24 hours of vomiting, diahrrea, etc. She said that it could
> also be a light strain, where you just don't feel quite right. So I had
> the flu, without even knowing it.
>
> Sorry this got out of hand and got too long, but sometimes it takes a
> thousand words to get one point across.
>
> I agree with another recent posting, that the "aggressive diagnosis" of TM
> in my case and the fact that I was put on IV steroids within 48 hours of
> onset saved me from more severe and permanent damage. I am still affected
> in the bowel and bladder department, but not incontinent, just the
> opposite, and still have the pain and "weird sensations", but they are now
> limited to my left leg and foot and right heel.
>
> I thank the doctors for their wise decisions in my case, (they could very
> easily have told me my accident caused my injuries, and sent me home to
> live with paralysis) and I thank God every day for giving me the strength
> to handle what symptoms I do have left. I know that others here are in a
> great deal more pain than I am, and I hope that someday there will be help
> for all of us, that some "miracle cure" will relieve everybody from their
> pains.
>
> I will close for now, before I REALLY start rambling and get off-track.
> Debbie
> dcapen(AT)ivic.net
Hi,.......your story was very interesting, and informative. I too
thought my symptoms was related to a Chiropractic adjustment that went
awry. But, thinking back, about 2 weeks before the symptoms appeared I
was exposed to a very virulent flu bug. I wasn't feeling very good
afterwards, with alot of abdominal cramping but, because I have IBS too,
I just chalked it up to that, but maybe I had a mild case of the flu?
Anyhow that next week I was having alot of pain, and stiffness in my
neck so I went to a chiro., and he reefed on it 3 times before I yelled
at him to stop because he was hurting me. Within that same week, I went
swimming and when I dove into the water I couldn't feel the wetness on
the right side of my face. By the end of the week, the right side of my
upper body was partially numb, and I couldn't walk unassisted. I spent
the next 10 days in the hosp. as a "mystery" patient. Stroke, hysteria,
sympathetic dystrophy, and possible MS was suggested. Because I've had
several injuries to my neck, ie. car accidents, and a diving accident,
those were ruled out because the vertebrae were all o.k.
For 10 years I went to Dr. after Dr., and because no lesions were
found, and the EMG'S, Nerve conduction, and spinal taps, CAT scans, and
MRI's all came back normal, I was led to believe there was NOTHING wrong
with me, and maybe it was psychosomatic. I sought out a psychiatrist who
said it wasn't psychosomatic, and validated my symptoms as a physical
cause. But, it wasn't until '94 that an MRI of my neck showed a lesion
at C5 to C7. So a definite dx of MS was given me then.
I feel like I'm back at square one now because MS has been ruled out
again, and TM is the DX now.
Thanks for sharing your story. I don't mind the length, we all need to
tell our stories, and in my case I have many years to tell about! <G>
Smiles/Jackie