Doctors

[Guest guest]

Good Luck and I hope everything works well for .

Poor guy I hope his throat stops burning. I'm praying that you have a

great visit today. Keep us posted.

B.

> Hi all well we finally got our appointment to the gastroligist... It

> is at 3 :30 today and we are going to see how 's throat and

> belly are from the relux it is weird he never throws up but he has

> reflux? Silent we guess, we are going to see if he still needs to be

> on the prevacid, he complains alot that his throat is hot and hurts

> so we will see, wish us luck. I am glad we are not having to do the

> endoscope today or the colonoscopy I am sure she will want to do one

> soon though!! They said last time if it wasn't better they wanted

> to do surgery so keep him in mind Thanks,

[Guest guest]

As anyone who knows me will tell you once I start it's hard to shut me

up, sorry bout that, guess it's started now!

Anyway, I'm having problems with my doctors and wondering if anyone

has any suggestions. My GP I'm pretty sure thinks Neurosarc is a made

up disease, he treats me like I've got leprosy most of the time,

recently I went in to speak to him about the tremors that have gotten

bad enough now that I have trouble doing even simple things. Wanting

nothing more than to know if there was any drug which might make them

better his answer was " not anything that can be taken with your other

meds, and it's certianly not bad enough that you can't work. " Now

maybe that doesn't sound so terrible until you realize that 14 or 15

years ago when this was first starting up with a sarcoid tumor in my

lungs and then became pulmonary sarc I was taken off work by my then

doctor for a little more than 3 years, with no disability payments

mind you, we nearly lost our home and struggled for our daily survival

until I wnet back to him and said I didn't care what it took I had to

work! I've worked ever since and I love it so how dare this clown!

Sorry, it gets me a little fired up.

Then there is my pulmo guy, some of you might have heard of him, Dr.

Byrd, in Spokane Wa. he's very much the expert in this town,

nearly 80 years old and we don't get along at all. For the last ten

years my lung sarc has remained stable, (thank God), so every time the

neuro problems kick up I am sent to him for whatever sense that makes

adn because the lung tests come back ok he says the same thing every

time, " your lungs seem fine, so i'm going to cut back your pred.

because you know there are a lot of side effects, blah blah blah. "

Yes I know there are a lot of side effects, I live with the realities

of what is happening to my body both because of the pred and because

of the sarc every day! So the last time we did this dance I told him

I wasn't going to go through this again, and surprisingly he listened

and didn't reduce my pred., good thing too because I just got it

increased a bit over a month prior to this because the nerve pain,

vertigo, memory loss, pain in back and head, tremors, chest pain and

shortness of breath were the worst they have ever been but reduced and

became much more managable less than a week into the higher dose. So,

yep I know it's bad stuff but I've got to function because like my GP

said it's not bad enough to stop working!!!!!

So now my next stop is my neurologist who was the guy who diagnosed me

after only 5 years of telling him what it was, so this happens in late

Feb. I'm looking forward to it becasue he's going to say, " well I can

see the problems are getting worse but there's not much we can do. "

So now Liz (my wife who has stood by me through all of this without

the slightest wavering and who I thank the Lord for daily) and I are

thinking it may be time to get serious and look into getting seen by

one of the neurosarc clinics. But as you might expect we have no clue

how to go about this, can anyone help?

Oh and sorry about all the whining...................

Stu