Hi Jill,
Sounds like you have a lot on your plate right now. I had never had pains
in my head until about 10 weeks ago, and I have had TM for 4.5 years. (And by
the way, I have started having pains on the left side of my head now!) What's up
with that. I did see my new Rheumatologist last week and he spent an hour
and a half with me. Since I just recently moved from Washington to Idaho, he
wants to start completely fresh with me - I'm actually glad about this because I
have had Sjogrens Syndrome since 1988. It has it's own "nasties" - I had the
worst Sjogrens flare up the week before that I've ever had and where there is
inflammation there is trouble. Which is how TM entered my world. (Instead of the
inflammation from Sjogrens going for my joints or organs, it went or my spinal
cord - I don't need that again - thank you very much)
My Rheumatologist suggested that the pains in my head could be coming from
a nerve in one of my lesions. I just had every blood test known to mankind
Thursday, so we'll see what, if anything, new shows up on those. He also
suggested another brain MRI since I haven't had one since early 2004. And I am
not sure why we all say this, but I pray it has not progressed to MS!
Well, whatever it is, it's just one more thing to learn to accept and get on
with life and try to make the best of each day that we are blessed with.
How are the pains in your head? Do they move around to different
areas or are they pretty much the same each time? I really find it interesting I
have not heard this from other TMers......well, we're just "special"  Take care, Jill and let us know how you're doing
Linda (Eagle, ID)
----- Original Message -----
Sent: Saturday, September 16, 2006 9:09
PM
Subject: Re: [TMIC] tm
Linda,
Sorry this took sooo long. I've been so busy with school and work
and back to school for my daughter too.
I used to get the pains a long time ago but now they are worse since I
got the TM last year.
My pains seem to get worse the more stressed out I get, but I wrote
tonight about my jaw and stuff feeling "funny" all the time. I feel like
I'm grinding my teeth alot and I'm just all out of whack? I'm going to
the neuro on 10/18 and see what he says. I'm sure that means more
MRI's. I just hope it's not MS. It seems like other people w/
those symptoms are the MS'rs. On the other hand....at least there's meds
for MS like that LDN stuff that everyone is raving about.
Hang in there,
Jill
L T CHERPESKI <[EMAIL PROTECTED]>
wrote:
Jill - oh thank you for writing. I have not seen any posts about people
having these pains in their head! I thought I was all alone on that one.
And, yes, they are very very scary - new lesions and aneurism or even worse
have all crossed my mind. I have had them every single day, on and off all
day long, and most of the time now when it happens I say out loud to myself
"gee that was a nice pain" - My neuro now wants to do a brain MRI - I can't
even imagine what is causing this. How long have you had the pains?
Hugs to you - hang in there
Linda C
----- Original Message -----
Sent: Tuesday, September 05, 2006
5:06 AM
Subject: Re: [TMIC] tm
Linda,
YES YES YES I've had the head thing and my lesion is at T10-11 as of
last year. I am so scared that those "head pains" are new lesions
forming or an aneurism or something???? I'm going to see the
neuro on 10/18. I've written on here before about the head pains but
not "headaches" and no one seemed to have them at all?? Sounds like
we're in the same boat with that....
Jill
L T CHERPESKI <[EMAIL PROTECTED]>
wrote:
A question to Linda Elgi - your description of how your TM started
intrigues me. Do you know where your
lesion is? I have some of those symptoms also, and my lesions
are are C4,5&6. And I have had a NEW and even better symptom than
all of the others I have - I have shooting pains on the right side of my
head, shooting clear over the top almost to my forehead. Have had them
about 8 weeks now. Not fun. Neuro not completely sure what is going on -
still more testing - the never ending tests. Has anyone else had this
happen - the head thing?
Thanks
Linda C
----- Original Message -----
Sent: Monday, September 04, 2006
2:49 PM
Subject: RE: [TMIC] tm
Mine hit me all at once, in half hours time.Started
with a tingly in my low back, and progressed to my legs geting rubbery
and falling alseep and that was it...lost both my legs and got rushed
to the hosp.
Linda Egli <[EMAIL PROTECTED]>
wrote:
My
symptoms came on over a 6 week period. Started with numbness
in hands & feet, moved to arms & legs, then to trunk &
chest with banding below my shoulder & thankfully stopped there.
Took about 6 months for all this to level out & now left with
numbness esp. in hands and feet, fatigue with anything I do, &
poor balance. My main problem now is increasing tremors in my
right hand & now some in lower jaw (have never heard anyone
mention this), but my neuro thinks it is normal.
Jill Z
<[EMAIL PROTECTED]> wrote:
Mine
came on gradually also. I thought it was Cauda Equina
Syndrome again like my dr. said the first time 2 yrs
ago....
"Butcher, Bernie [S&FS]"
<[EMAIL PROTECTED]> wrote:
I think
mine came on gradually - when I thin back to what happened
before I went totally numb, tingly and lame on my left side,
there were some instances where I think it may have been my
spinal condition: walking wobbly, bumping into things, spilling
coffee , klutzy kinda things.
BERNARD
BUTCHER
I notice that every thing refers to acute TM. Has
anybody in the group had TM that has come on gradually.
Everyone should read the link that Frank sent about GP's.
There I guess is nothing we can do about this but we certainly
should be informed. At a hospital here in Virginia who
employs physicians unless they see patients in an allotted time
the physician is asked to leave. Am afraid that this is
becoming the norm and is certainly a poor way to practice good
medicine.
Ann in
Virginia
Krissy
Zodda
Tri State Support Group
Leader
(603)589-1894
http://www.geocities.com/tmladyk/home.html
~I'm
In pretty Good Shape
For the Shape I am in~
|
