Re: New Diagnosis
Jo Ellen Finkelstein (ghellen(AT)ninenet.com)
Fri, 28 Nov 1997 01:37:43 -0600
Breck wrote:
>
> Hello my name is Breck, my mother just got diagnosed with TM it is
> effecting her left arm, left side to her left thigh.. it came on
> suddenly like I am sure most of yours.. we have so little information on
> this.. I am a nurse currently practicing in Oregon my mother is a
> retired nurse in California.. I am embarrassed to say I know almost
> nothing about this disorder..
> I am interested in hearing what most of you have done in regards to
> treatment on first onset for comfort (she has very little pain, mostly
> numbness), physical therapy, and probably we will be seeing her with
> depression soon.. she is a very active woman.. She is 79 yrs young..
> Please if anyone would email me I would love to hear about your
> course with this.. I notice a lot of frustration in regards to your care
> is this what we will be experiencing.. it is good to know all of the
> emotional ends of this disease too..
> I really appreciate what any of you can offer me.. thank you in
> advance..
> A concern and worried daughter..
> Breck HawkHi Breck, Joellen here. I too was in the nursing field, many patients
my age with MS. That was a big fear of mine so when this happened and
they were considering that it may be MS (although the onset was so
rapid that they weren't sure) I was extremely upset, they couldn't
figure out what was going on for the first month and due to recent
upsets in my life (husband died six months before of CA after marriage
of 17 months) they told me it was a psychosomatic problem!!! The next
month they finally did an MRI and saw the lesion on my cord. I am
taking Zoloft for my depression (suicidal thoughts off and on ) and
Baclofen for muscle spasms. I have had this for a little over a year, I
had never heard of it before and the scant materials that I found in the
hospital librarys neurological text books was no help ( left the
library in tears!) I realized that I would have to do my own research
and stumbled across the Transverse Myelitis Assoc. and this board. This
has had the most info for me and the insight that I am not alone and
there are others going through these same experiences is comforting/, I
would not wish this on anyone else but the knowledge that others know
how I am feeling at times is a help. We have several things that can be
frustrating: Doctors, friends and family who don't understand WHY we
can't walk, (my family still doesn't understand that I HAVE feeling but
it is not 100% of what it was, and if I have feeling why can't I walk
yet?)not getting a diagnosis faster, problems applying for SS disability
benefits, finding aides that are reliable, etc., etc. etc.!! Tell your
Mom to hang in there she may have a good chance of making improvement,
and that if you let yourself get too down for too long you will be
tempted to give up, DON'T even if you don't get everything back fighting
for what you can get is better than the alternative.
Joellen