You sound you have a very caring doctor. I do not know if you are
getting a second opinion. You told us a lot about variety of situations
you are in. I do not know if this particular doctor that you just saw is
a general practitioner or a movement specialist. Some people I have
heard of having MSA are strictly following a diet, very little protein.
They say that diet is making them feel a little better. If your immune
system gets stronger you might be able to fight infections. It was good
to hear from you. Take care.
Emily
----- Original Message -----
From: "Deborah Setzer" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, April 25, 2002 4:01 PM
Subject: Snap, Crackle, Pop and Itch


> Hi,
>
>   I just got back from the doctor's office.  I was told that my rash
is
> because of my PD+ (MSA), specifically that my immune system is not
> functioning correctly.  I was advised not to even go in our hot tub
(which I
> just got back into working order day before yesterday) or even a
swimming
> pool because I am likely to have a reaction to the chemicals in it.
>
>   He also told me that my snap, crackle and popping is probably due to
> osteoporosis but again, because of the other problems that I have, he
did
> not see the use in ordering a bone density test because regardless of
the
> results, he cannot put me on the medications available to fight it.
He
> reminded me that I am still unable to even take vitamins.
>
>    He gently reminded me that the MSA is causing a lot of the
different
> major organ systems in my body to not work right. He is a very kind
doctor.
> He always spends a lot of time with me and answers any questions that
I
> have.  He looked truly sad when he told me that he doesn't have any
magic
> answers.  He ordered a number of blood tests (He wants to check my
liver
> function and current immune state among a list of other things) and
> increased the dosing on 2 of my meds (famotadine & zyrtec) but is
being very
> cautious about adding any additional medications until after the blood
work
> comes back because he is afraid that I might get an even worse
reaction.
>
>   I talked to him about all of my left over medications and he is part
of an
> organization here in Charlotte that helps those who cannot afford
meds.  He
> said if I brought him all of my unused medication the he can promise
me that
> it will get into the hands of someone who needs it legally.  Maybe
others of
> you have such organizations in your area both for donating meds and
> receiving them.  It's worth a call to your doctors to find out.
>
>   I don't know why, by now, I haven't figured out when I go to the
doctor
> they are not going to give me some magic pill that will make me well.
> Because of the botched DBS and the resulting infections that I had
earlier
> this year, they cannot even give me anything to "make me more
comfortable."
> Taking 1 darvocette for the pain 3 weeks ago necessitated me going
back on
> steroids for a week.
>
>   I'm glad ya'll are here.  I have to admit something to all of you so
that
> I can have the courage to face it myself.  I won't be able to have the
DBS
> redone for my PD+ (MSA.)  I was scheduled for July 10 (penciled in)
but the
> reality is that the MSA is progressing, I'm not getting better.
Harder than
> that to face is that I'm not even over what my body went through from
the
> brain infection in January, no bad how much I want to be.  Reality is
if I
> can't even take a darvocette...I would never live through the general
> anesthesia for the DBS.
>
>   Once again, I find myself back to that point of having to accept
that this
> is as good as it is going to get and I'm going to have to deal with it
and
> be thankful for what I can do and what I have done. (Denial is so much
more
> fun than reality)!
>
> Deborah
> aka Tenacity
>
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