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Glenda

There is more than one Glenda in the group, right? (Can't find

the e-mail Re: to Glenda I wrote a few days ago) You're from

Oregon too I think.

I live close to Portland but closer to Salem. We moved to

Woodburn from Portland 2 years ago last May. Seattle is not an

option, at this time I'm sure. Our HMO is such that we don't have

a lot of choice as to where we go. My PCP must make all the

referrals.

Should he gets closer to (the dreaded) cRaP dx, perhaps some

of this info will help. Dr. Penner is young and shows concern. He

seems to be very open to my needs and is handling things as

they present. We're just getting to know each other after about a

year. I think he must go home with horror stories about me " ... a

fat lady came into the clinic today.. " (a la Al Bundy!)

Maybe you have noticed that I'm not so bashful after all... I'm

easy to get along with, but I have been described as a " breath of

fresh air " and/or a " tornado in progress. " There should be an Rx

on my forehead... take in very small doses!

...............................................................................

Sharon,

I'm not so miserable as I could be if I really tried! Really, I'm not

that bad off. It's just the everyday... everyday and it doesn't quit.

Many of you can relate. But no one says " ...but you look so good.. "

much anymore. The drain begins to show sometime.

In June Neurontin was added to my meds for chronic pain. I

understand that it was developed for epilepsy to prevent

seizures. It acts on brain chemicals to block nerve stuff. How

about that for scientific explanation? Of course the medical

disclaimer applies!

...............................................................................

,

You didn't have to hold your breath!

Odors can not be delivered by e-mail!

It's funny that you would start off your post that way. I start out with

IBS and left the WORLD BREATHLESS! This initial problem

rendered me housebound and precipitated my " medical

retirement " (that's what I call it.)

Now this IBS situation is best not discussed in mixed company

(the haves and have-nots...them that haves is them that gets... )

The details will be in my upcoming book! LOL

My first PCP loaded me with meds; I saw him a least once a

month for several years. The dx was depression, depression,

and possible depression. Sure... I wanted to die and and pretty

soon (Just between you and me) I wanted to take this RAT

DOCTOR with me! Everything started going bad. I hurt. I couldn't

sleep. If I ate, I was in the bathroom. If I didn't eat I was there too.

I hibernated, ready to die for several years.

When I got one of my bad Bronchitis things that wouldn't quit, he

decided it was time to do some tests. Maybe I had

malabsorption? He called me in and put me on a NO GLUTEN

diet. The next thing I heard he left town.

Then bad arthritis pain came in like a lion. There were no lambs

involved! I was started on ever increasing doses of NSAIDS. 4

years later a different PCP (we moved, I stayed on the diet) Got

me to a Gastro guy ( " butt doctor " ) He removed a benign polyp,

took other intestinal biopsies, blood tests etc. Soon I was off the

no gluten, and on the Metamucil for life. Side note: I have

continued to gain since. These pounds are, needless to say,

unwelcome! so much for malabsorption!

WHAT WAS THE QUESTION? oh yes,

" What kind of doctors have you seen? What has been their

diagnoses? "

------------------------------------------------------------------------------

This is the gist of it (edited) from a post I wrote to another group:

" ... What I need is to get a referral to see a dermatologist. My PCP

may be ready to do that now.

Of course the SPOTS are just a current mystery to investigate.

They don't hurt or aren't of that great a concern to me or my PCP.

What is happening is that my WHOLE body seems to be

reacting to an " invasion. " Or, more correctly, my body is reacting

against itself????

I'm not certain anyone is interested, but recently my thumb nails

have developed big dents in them and my finger nails seem to

be shrinking. I've read a bunch about this too and it could be a

sign of some bad stuff. When my PCP saw my thumbs, he finally

tested me for ANAC (for Wegener's etc.) and ACE (for

Sarcoidosis etc.) Haven't talked to him since these tests came

back negative.

Every time I come to a dead end in this puzzle, I tend to go off on

a quest of my own for answers. It's happened so many times

though. Sometime I ..... Well, Let's just say, I'm getting

professional help for that too.

One big problem is that I haven't developed a consistent TEAM of

supporting professionals. Since 1994 I've had 7 PCPs. (That is 6

MDs and 1 Osteopath who thought I had RA despite a neg.

Rheum factor) 1 retired, I left town, and I had to leave 4 because

of moves. I don't want to change doctors again! I've had 2

different rheumys. I have a wonderful eye specialist, surgeon

etc., that is handling my glaucoma and eye problems. My dentist

is on board and has ruled out Sjrogren's. My PCP suggested

that dx a while back.

The PCP I had 2 years ago (was 74! and has retired since!)

" missed " a slightly elevated SED rate because it was on a

second sheet of the lab report and got lost. Anyway it was only 46

but it got me a referral to a rheumy (my second one) about 6

months later. Got another dx of Fibro. By then my SED was down

to 12! C-reactive was up though. Have to look up how much.

SOMETHING is going on! And I will push the issue when I get up

my steam again.

This June I enlisted a Mental Health professional who will

monitor my meds and a Mental Health Social Worker to

coordinate the TEAM! I see them both tomorrow as a matter of

fact. Perhaps that's why I'm spilling so much about me on this

forum.

Sorry guys! Hope I didn't get my " guts " on your shoes!

Good day to you!

blue

DRUGS:

I take 9 prescriptions daily now, none of which is anything that is

going to stop the progress of this thing if it is RP. I've been on

NSAIDS forever for inflammation it seems: 2(00) Aspirin... and

call me in the morning; massive amounts of Ibuprofen, Sulindac,

Naproxen etc. Beta blockers for BP and heart, Hydro meds. and

Potassium to balance it. Tricyclic antidepressant (for pain and

sleep aid) Zoloft (Have taken many other antidepressants

through the course of the THING) Neurontin for pain... it helps for

manic/depression too, WHO ME? manic!!!!!

" ...haven't said enough... maybe I said too much. "

" ...that's me in the corner... "

blue

PS: , You can breathe now!