Sorry it has taken me a few days to respond but I was out of town for my
husband's grandfather's funeral (that was a mouth full).
I am in the process of locating a neurologist that specializes in TM or MS
and have been for a while. My neuro is a really nice man but his
speciality is obviously not TM, he has only had three TM patients. He is
not young! Anyway, he likes me to fax over, each week (but I am bad about
this so usually it is only when I have something odd happen), a note
listing how my week went including odd happenings, stress level, fatigue
level, etc. I don't like to visit him or call because he just ties it all
to fatigue. I don't know if he is right or not, I guess I just have to
wait until something really weird happens. On my last visit, he commented
on having a second MRI of the brain done at my one year mark (in August).
My first MRI of the brain showed no lesions. Only one spot, which is
located at C2-3 in my spine. I also have asked if this lesion might cause
some of the dizziness, double vision, lightheadedness (sp?), etc. because
it is so close to my brain stem. He says no but I still wonder. When I am
fatigued, I often get the shock down my spine when bending my neck forward
(L'Hermett's sign, I guess) but usually for just a few minutes in the
morning. Over the last year, I have noticed that my symptoms (mostly
numbness, weakness and the tight band feeling of right arm and hand)
flare-up when I am over-stressed, tired or when I have been out in the heat
(I dread summer here in Austin, Texas).
You are not alone in feeling ackward when talking with your neuro. I
definitely sympathize, I often feel like a complete hypochondriac when in
his office. My husband says I don't say enough. I guess it is just a
difficult thing for the neuros too since they don't know what causes this
disorder or what to do about it. In a sense we are all experiments and
hopefully they will find a cure to TM soon. There seems to be a growing
number of us out there.
Sorry for being so long winded today. My opinion is to definitely tell
your neuro about every little symptom (maybe suggest faxing them over to
him) and take the advice given me by many on this list, KEEP A JOURNAL OF
EVERYTHING!!! Best wishes.
Nicole
At 07:33 PM 5/15/97 -0400, you wrote:
>Dear Nicole and Barbara,
>I have just been reading back letters and came across yours. I too have a
>leision at C2-3 and have similar symptoms dizziness, lightheadedness, and
>numbness. This week I've noticed flashes of light, particularly when I get up
>in the darkness in the night to use the bathroom. I have not mentioned it to
>my doctor either because I feel silly calling him with every little thing. A
>while back I looked up and everything was shaking. It happened twice for
>merely seconds. I told the doctor and he said that maybe I was tired. I don't
>think tired had anything to do with it, not to mention I'm tired all the
>time! I also continue to experience L'Hermett's Sign, the unpleasant
>lightening sensation down the spine when I bend my head forward. I'm not
>complaining. I know I have it good compared to many. I'm just curious because
>I'm never sure when I should or shouldn't call the doc.
>Carolyn
>
>
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