New Menber / Intro

[Guest guest]

Hey Rick:

How frustrating for you to not have had access to your diagnosis for so many years. Hopefully it isn't too late for you to be able to get some relief from some serious DMARDs that will slow down the progression of your disease.

You have a great attitude and your enthusiasm and optimism is inspiring. Good for you. And welcome to the group.

gloria

[Guest guest]

Hello everyone. I am Rick, 39 y/o in Tennessee. I was diagnosed with

RA last September with a very high RA dactor. However, when I was

getting al the history information on my arthritis, aches and pains I

found in my military medical record (made a copy when I got out)an

entry in 1991 where they suspected RA and ordered evaluation for it.

This evaluation never happened, I was never informed about the

suspicion or entry and I was discharged the following years for

arthritis/bursitis (had been for 9 years). Also when I went to the VA

outpatient clinic a few months ago, I remembered the VA had tested me

for RA back in 2001 and 2002. I asked the Dr, what those test results

were, he told me they were both positive.

You can imagine my frustration with finding out that the last 13

years could have been much easier to get through if I had been

treated properly. Instead I stayed in great pain exhaustion and

really avoided going to the Dr. for any of it, thinking they dthink I

was a hypocondriac if I told them all my symptoms and such. I only

went to the Dr. when the vertibra in my neck would twist and pinch a

nerve or similar problems requiring immediate medical attention. Part

of how I found out I had RA back in September was due to an all of a

sudden/out of nowhere lung problem. They told me I hava a severe case

of Adult Onset Asthma. I have been on 25 - 40 mg daily of Prednisone

since then (almost 8 months now). Also in this time, the diagnosis on

my lungs has changed 5 times. Dr is now thinking Vasculitis. All I

know is without Prednisone, my lungs fill up, throat closes and I'm

on my way to the ER. I klnow this because they've tried to wing me

off the Prednisone several times resul;ting in the same thing.

This is a terrible disease and unfortunately, we all have similar

stories of pain, exhaustion, frustration, uncertainty and fear.

I tell myself the following everyday.

My lungs have major problems,but I don't have Lung Cancer I'm

grateful

I have to use a cane to walk most of the time, but I'm not confined

to a wheelchair yet, I'm grateful

I'm walking, talking, breathing, loving and ocassionally " ticking "

people off :-) and I'M GRATEFUL that it's not as bad as it could be

and is for many.

[Guest guest]

Thank you for the " Welcome " Gloria. I look forward to being a member

of this group and interacting with all the members. Group can be a

very powerful asset to any situation, particularly one like this

which carries so much of a psychological impact on the sufferrer AND

the family.

My family has been absolutely wonderful over the years, with and

without the diagnosis being made available to me. As far as my

inspiration..well, I wish I could claim it as my own, the real

inspiration for me is my family. With so much positive attitude,

optimism, support,love and care.. one can't help but to catch a

little of it. I hope all the members families are as supportive as

what I am blessed with.

Rick

> Hey Rick:

>

> How frustrating for you to not have had access to your diagnosis

for so many

> years. Hopefully it isn't too late for you to be able to get some

relief from

> some serious DMARDs that will slow down the progression of your

disease.

>

> You have a great attitude and your enthusiasm and optimism is

inspiring. Good

> for you. And welcome to the group.

>

> gloria

[Guest guest]

Hi Rick,

welcome! I'm also 39 and now live in NJ(work in NY) but lived the last four

years in Alabama... was in Tennessee a few times and thought it gorgeous.

did a summer thing at Sewannee... really beautiful.

I'm shocked that not one but TWO military doctors blew you off. You might

really have a case for pain and suffering. I'm sure that's the last thing

you want to deal with right now BUT at the very least you should write a

letter of complaint to both doctors which you copy to their superiors and if

you don't get a response, copy to your congressman/senator etc.

Look at it this way: maybe if they get a rebuke they'll think twice before

blowing off someone else. There is NO reason you should have suffered in

ignorance for ten years... and it's through the progression of the disease

that joints are deformed and in a way if you have deformities, THEY are to

blame!

Medicines today are a lot more effective and less toxic than they were when

I was diagnosed in 1979 (I had juvenile rheumatoid arthritis) and you will

feel better soon!

Gwen

[Guest guest]

I have to say honestly, I am more then frustrated at the military

abd the VA blowing me off, I am just plain angry. I was a Marine for

9 years and followed every lawful order ever given. Then after 9

years, they told me to go home. But what's even worse then them

holding the RA diagnosis from me for alomost 13 years, is in 1999

the VA diagnosed me with Emphazema. This diagnosis was later

reversed after a new VA Dr. was assigned to me and he tested me for

Emphazema. Ther ewere no signs of it whatsoever. Last September I

had what was similar to a severe asthma attack, I have never had any

breathing problems whatsoever. Of course the Pulmonologist I went to

put me on steroids (prednisone). well, 8 months later, I'm still on

25 - 40 mg of prednisone daily and the VA Dr. says that what the

other VA Dr. has seen in 1999 and thought was Emphazema was probably

the beginnings of Rheumatoid Lung Disease. I am now Steroid

dependent, and cannot get below 25 mgs. The Prednisone has caused

high blood pressure problems, an accelerated heart beat, Osteopenia

(loss of bone density) Osteoperosis, vision problems, briusing and

of course weight gain (I kind of like the weight as I was always

pretty skinny). Just last night I was in the ER for rectal bleeding.

They think it may be another result of the steroids but not sure

yet. A year ago I was on 2 medications, Motrin and Darvocet. For the

past 8 months I have been on 14 prescriptions, and have an average

of 20 Dr. appointments a month between the several specialists I now

have to see. The pain of the RA although is significant in itself,

it is almost minor by comparison to everything else.

Tehy have changed the diagnosis on my lungs several times, Asthma to

possibly Vasculitis, back to Asthma to definately not Asthma to

Rheumatoid Lung Disease back to Asthma and now they are saying

Vasculitis again. I wonder if my pulmonologist has aven a clue what

is going on with my lungs.

As far as pain and suffering (as mentioned in someones reply to my

initial post) I don't think the VA can be sued. I do know that My

current VA Dr. told me to apply for service connection disability

for the RA and everything that came from the RA. BUt until someone

comes up with a concrete diagnosis on my lungs, all the other stuff

doesn't count.

I have tried a few different medications for the RA, but with an

Aspirin allergy, my choices are limited. Currently on Arava. It

seems to be going pretty well with the morning stiffness and the

severeness and length of flair-ups. But my shoulders now hurt more

then any opther body part. I can't wear pull over shirts because I

can't get out of them without someone helping me.

I read through many of the postings on here and I see and relate to

many of you. The sufferring is great AND THE HARDSHIPS ARE ALL TOO

OFTEN GREATER. BUt with as bad as most of our situations have been

and are, all of us sought out and found this group (a means of

support) I see that as a great deal of determination and hope in

everyone here. To feel so lousy and in pain, exhausted, frustrated

and even angry...we still sought out a means of better coping with

our disease(s) and i see alot of you are very active in your own

support as well as the support of others. Talk about inspiring!!!!

Bravo to each and every one of you. I only hope I can all that is

given within this group and learn to cope with my individual

problems which of course won't by any means cure me or even reduce

my pains. But this group (it seems to me) offers so much more then

than any Dr. or medication can give..quality of life, will to

continue and fight, a means to cope as a sufferrer as well as a

loved one of a sufferer. I THANK each and every one of you for being

here for yourself and for the rest of us.

Rick

> Hi Rick,

>

> welcome! I'm also 39 and now live in NJ(work in NY) but lived the

last four

> years in Alabama... was in Tennessee a few times and thought it

gorgeous.

> did a summer thing at Sewannee... really beautiful.

>

> I'm shocked that not one but TWO military doctors blew you off.

You might

> really have a case for pain and suffering. I'm sure that's the

last thing

> you want to deal with right now BUT at the very least you should

write a

> letter of complaint to both doctors which you copy to their

superiors and if

> you don't get a response, copy to your congressman/senator etc.

>

> Look at it this way: maybe if they get a rebuke they'll think

twice before

> blowing off someone else. There is NO reason you should have

suffered in

> ignorance for ten years... and it's through the progression of the

disease

> that joints are deformed and in a way if you have deformities,

THEY are to

> blame!

>

> Medicines today are a lot more effective and less toxic than they

were when

> I was diagnosed in 1979 (I had juvenile rheumatoid arthritis) and

you will

> feel better soon!

>

> Gwen