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Sandy,
I guess the doctors figured the damage was done yet
they did mention steroids but only said that if I had been diagnosed with MS I
really had no choice but to take it. The one neuro who talked to me about
it did emphasize side effects and didn't seem persuasive about taking it.
I don't think I got any worse since the onset so I guess not taking the steroids
didn't result in more damage.
This neuro I just went to last week is suggesting I
may have gotten small lesions with no symptoms so thus the three MRIs I got
yesterday.
I was going to get something for fatigue but
decided to wait until the test results.
I think the doctor did talk about
Provigil.
Thanks for your input,
Gary
----- Original Message -----
Sent: Tuesday, June 27, 2006 10:58
AM
Subject: Re: [TMIC] New Neurologist
Gary,
Oh. I was under the impression that the reason for the steriods at
initial onset was to stop the inflammation. I took extremely large
doses for about 5 days and am completely convinced that if I had not, my
lesion would have been much larger and I would have been paralyzed.
Did your doctor think the inflammation had subsided and the damage
(lesion) was already done?
I do agree with him on taking the MRI's. It can't really hurt
(except for the cost). I have had many more since onset in 1999.
Usually, I would have a test when I had a new
symptom. Symptoms usually related to a problem (such as a kidney or
bladder infection) resulting from my residuals. Although, my neurologist
wanted to keep up for a while to make sure I didn't have any more
lesions. At this point I probably won't have any more mri's unless I
have a problem. (onset was 7 years ago)
As far as fatigue medicine, my favorite is provigil. I love
it. It worked, no side effects. But of course, my health ins.
doesn't pay for it anymore since it's only fda approved for narcolepsy and MS
fatigue. So, I've tried all the others out there. Either they
didn't work or too many side effects. So, now I take adderall
(amphetamines) 15mg-2x a day. Works great, but is very short
lived. The great side effect is that so far I've lost 15lbs. in three
months! Great for me because since onset I had gained over 30 lbs.
I lost about 15 back in 2001 when I stopped neurontin. So now, I'm
almost back to the weight I was! Yeah. It does make me a little
jittery especially if I drink coffee, so I have had to cut that out to the
occasional cup. Since it's summer, I'm opting for the sweet southern tea
instead.
-Sandy Brassil
Charlotte, NC
-----Original Message-----
From: [EMAIL PROTECTED]
To:
[EMAIL PROTECTED]; tmic-list@eskimo.com
Sent: Mon, 26 Jun 2006 22:11:30
-0400
Subject: Re: [TMIC] New Neurologist
I refused the steroids because I was able to walk (used
a cane for a while) and the neurologist painted a pretty unattractive picture
of the possible side affects. Figured I'd just live with my symptoms,
which I have for two years but I am fortunate not to be
as badly stricken as some on this "list" .
----- Original Message -----
Sent: Monday, June 26, 2006 8:34
AM
Subject: Re: [TMIC] New
Neurologist
Why would you refuse steriods? -----Original
Message----- From: [EMAIL PROTECTED]To:
TMIC List < tmic-list@eskimo.com> Sent:
Sun, 25 Jun 2006 22:08:19 -0400 Subject: [TMIC] New Neurologist
I was just wondering about your
thoughts....
Two years ago I was "hit" with TM (C-3), spent
a couple days in the hospital, refused steroids, left with a cane and went
back to work a month later, just living with the stiffness, numbness,
burning, fatigue, etc. The two neuorologists who saw me
and diagnosed menever mentioned a follow-up so I just went to my
GP.
Upon recommendation by some on this list to
keep in touch with a newologoist, and wishing for something for the fatigue,
I went to a neurologist who said I should have had follow-ups by a neuro and
we shouldn't just assume my TM is idiopathic but could be a result of MS (
my initial MRI showed no brain lesions). He said I could have gotten
more "small" lesions with no further symptoms.
If so, these small lesions could some day come
together and, his quote, "all hell break loose".
He wouldn't prescribe anything long term for
fatigue because he wanted more MRIs. So, tomorrow I will have
them.
I almost wish I hadn't gone to him as I don't
think I have gotten "worse" but learned to live with the symptoms.
Just not sure I agree with his reasoning; haven't really seen this view from
this list.
Any thoughts?
Gary in Michigan
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