About your MS question - The members of the group have gotten several
different responses from their neuros on this one. Mine thinks its possible
that I actually do have MS, but the jury is still out. I had another brain
MRI on Monday to see if they can see any MS activity. (My husband claims it
was to see if there was any activity at all....)
About the fatique and work. I don't know what you do for a living. I
create courses (stand-up, computer-based, etc) for a technical company.
They have been very supportive, and let me do alot of my work from home. It
helps alot. For awhile, I also tried cutting my work week back to 32 hours
- I took Wednessdays off, so I had a recuperative day in the middle of the
week. My husband has had to pick up some of the slack. For instance, he
cooks on the nights that I have been in the office. We also started using a
cleaning service every other week. I also try to pay some attention to not
packing too many events into my weekends. I usually stay pretty quiet on
one of the days. So - I guess what I'm trying to say is that I have become
creative in the last four years in figuring out how to work, still do some
of the things I enjoy, and still keep from getting too exhausted. I decided
this past year that I needed to make sure that I figured a way to have some
fun. I just finished taking a ceramics class on Friday nights. Friday is
one of the days I work from home, so I was in pretty good shape Friday
evening. And Saturday I could sleep in a little. It was wonderful to play
with clay for awhile. Let us know what you can figure out.......Ann
> ----------
> From: Ownmeny(AT)aol.com[SMTP:Ownmeny(AT)aol.com]
> Sent: Wednesday, November 11, 1998 6:26 PM
> To: Tmic-list(AT)eskimo.com
> Subject: TM - new to list - lots of questions
>
> I see there is already and Ann here so I will be Annie.
>
> I am 28 and married with a 3 1/2 yr old son (Ann - my son is Nicholas,
> too).
> I live in South Texas.
>
> In January of this year I started having numbness in both hands that just
> wouldn't go away. I went to my GP who sent me for an MRI of the brain.
> At
> the very bottum of that MRI pic they thought they saw something so I had
> the
> spinal MRI and I had a lesion (don't remember T1?). I went to a
> neurologist
> who sent me for a spinal tap and had his assistant call me 3 days later to
> tell me I had MS. I was devestated. My dad was in the hospital and had
> been
> off and on since January (cancer) and now this was happening.
>
> Well, soon after that, I started having heavy vibrating sensations in both
> legs whenever I moved a certain way. Since I hated the 1st neurologist
> (the
> reasons would make this letter even longer than it already will be) I
> sought
> another. He said I didn't have MS since there was only 1 lesion. The
> numbers
> in my spinal fluid were what the 1st neuro based the dx on and that was
> WRONG.
> Well, this second neurologist moved to Kentucky so I had to find another.
> I
> love the one I found!! She is very positive but also very realistic. She
> says
> my chances of developing MS are greater because of the numbers in my
> spinal
> fluid (proteins??) but that there is almost as great a chance I will not.
>
> I am experiencing less and less numbness - it just flairs up some times -
> and
> no tingling/vibrations in my legs. I have horrible fatigue sometimes,
> though.
> People at work have an extremely hard time understanding since I look
> "well."
> I noticed someone else had posted about that as well. I occasionally have
> a
> hard time walking normally but my mom says I've always been a clutz! It
> is
> just worse lately, e
> especially when I'm tired.
>
> I am on Cylert for the fatigue and it helps. I've missed only 2 days of
> work
> in 1 month vs 1 every other week or so.
>
>
> *********:::::::::My questions:::::***********
>
> 1. Anyone on Cylert?
>
> 2. FMLA - I have it but need more info on it
>
> 3. Why have I been told my MS chances are higher but from the postings I
> don't see
> much about that?
>
> 4. Anyone else miss out on fun stuff because you are afraid it will wear
> you
> out and make you miss work? I am afraid to do laundry during the
> week,
> go to dinner, etc. I pretty much come home and do nothing so I
> can make it
> to work.
>
> I am looking forward to getting to know you all. I'll try to keep future
> letters shorter. I am a big-mouth, though!
>
> What is this "survey" I'm hearing about?
>
> Annie in South Texas
>
>