I had my first TM attack in 98 and my second in 01. All my lesions are in
the cord. My second opinion doctor gave me the DX of recurrent TM and
probable RR MS. Those two little letters M and S made me eligible for MS
drugs. I have not had an attack since starting on the drugs in 01.
I can only wonder if the drugs have prevented any subsequent attacks. But
in hindsight, if I had it to do over again, I would have done the same
thing. If I had to decide it all over again I would take the MS diagnosis
and the drugs.
Of course the emotional adjustment was no breeze. It was harder to accept
than the TM.. I don't know why it was. It just was. And that began this
chess game I play everyday with the :"cord". Some people battle their
disease. I prefer to negotiate and strategize. I know its a battle I would
not win. So the chess game is the best I can do to try to maintain some
control...or at least the illusion that I have some control.
That's my story and I am sticking to it.
M y advice is wait until the 16th and then if the doc recommends the drugs I
would start if it were me. I use rebif and after an initial adjustment we
generally get along well.
Take care,
Sandy in Wisconsin where snow is promised but rarely delivered!
----- Original Message -----
From: <[EMAIL PROTECTED]>
To: "Sue Zieke" <[EMAIL PROTECTED]>; <[EMAIL PROTECTED]>
Cc: <tmic-list@eskimo.com>
Sent: Wednesday, February 15, 2006 6:44 PM
Subject: Re: Re: [TMIC] TM or MS
I am so confused!!! My new neurologist wants me to start MS meds
immediately. I don't understand, it's been four years!He is positive I have
MS. I have an appointment with another "top" neurologist in the Washington,
D.C. area on March 16th. I will see what he has to say! My injury was at
the C7-C11 on the spine. Thanks so much for getting back to me and I will
let you know what the next neurologist has to say.
Marie
From: Sue Zieke <[EMAIL PROTECTED]>
Date: Wed Feb 15 10:27:39 CST 2006
To: [EMAIL PROTECTED]
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] TM or MS
marie, your story certainly struck a chord with me. i was dx with tm in
may 2000. one lesion c2-c6. none in my brain. sept 2005 my neuro
repeated brain mri, i have 10 plus lesions in my brain, she tells me
absolutely i now have ms. then 2 weeks later as we talk again she
changes her tune after reviewing an mri i had in 2002 when i had
pneumonia, which was not of good quality as i couldn't hold still
because of the pain, because it too showed changes in the white matter
of my brain, then they called them insignificant. she says because
there hasn't been any other big symptoms it might not be ms. i did have
an episode of not being able to initiate swallowing a year ago. so she
ran more tests, evoked potentials on eyes and brain stem, another
lumbar punch, neuropsych testing. no more signs of demylenization so
for now it's not ms. the neuropsych testing did show marked decrease
in memory which could be a sign of ms, but not without other symptoms
she says that some people over 50, i'm 53, get these lesions in their
brains, just a part of aging, i guess. i really felt yanked around
emotionally. but am glad she changed her mind and didn't go ahead and
put me on the ms drugs. i have an appt in may to see dr kerr and am
looking forward to getting another opinion on this. sue
On Sunday, February 12, 2006, at 10:12 PM, <[EMAIL PROTECTED]>
wrote:
Feb. 7th was my 4th year anniversary of having TM... I have come a
long way from that night from "hell" when no-one could figure out
exactly what was wrong with me... Finally, it was decided TM was the
diagnosis. Johns Hopkins agreed with this diagnosis.I take 600mg of
neurontin 4 times a day... tho am never without pain.. I now walk with
a walker, have hand controls on my car and with my faith and family
have adjusted to my new life style. Due to Medicare I had to switch
all my doctors. A Neurologist was highly recommened as one of the best
in the area. Long story short...after all new MRI's etc... etc.. he
informed me that without a doubt I have Multiple Sclerosis. I am still
in shock and not sure what is my next step. I have made an appointment
with another "top" neurologist in the D.C area.. I have 5 lesions on
my brain which supposedly indicate MS. I am 59 years old. Also my
brother -55- was just diagnosed with underlying MS....
Any thoughts, suggestions would be greatly, greatly accepted... Anyone
of you with TM have lesions on the brain????
Thanks so much!
Marie Arthur
