Neck Pain/Gulf War Registry/Vietnam

[Guest guest]

Greetings everyone. Its been quite a while since I last posted. On

May 2 I finally had the knee replacement which kept me down for

quite some time and then on June 26 I had a double discetomy for

injuries sustained in the auto accident on Oct 21. So guess you can

imagine I've gone through enough. Did manage to keep up with the

Remicade infusions albeit a little late. Next infusion is scheduled

for next Tuesday and will be discussing further the option of

Orencia. Appears the Remicade is not helping me as was hoped for on

the 6 week schedule. Oh well, mind over matter my mother used to

say! I have to keep reminding myself it just doesn't hurt in

comparison to what other people have to go through.

On the discetomy: 2 discs were messed up in the accident and it

took my family doc 3 months to get an MRI scheduled. Didn't really

hurt my neck; however, i had immense numbness in the left arm, and

lost the use of 2 fingers. After the surgery the numbness was gone

completely and I could feel my fingers again. For now, it just

feels like the inside of the throat is swelled (which the

neurosurgeon confirmed today with a smile). Another month and I

hope to be back on top of the world.

Both my husband and I are registered with the Gulf War Registry as

he did participate in Desert Storm. Upon his retirement from the

Army 2 years later we both began having problem - more on myself

than him. Since there isn't a lot of info to go on, it's best to

register the entire family for precaution in the future. We are

also Vietnam Vets so there again, it could have posed potential

problems, but we really don't know. So I urge anyone with a

military background to get on the register/be examined at a VA Hosp/

Clinic and get your problems documented. There is a Gulf War

(Persian Gulf) hotline for more info: 1-800-796-9699.

Unfortunately (as I've mentioned before), I am diabetic, have this

blasted RA, fibromyalgia, congestive heart failure (CHF), kidney

failure, neuropathy in both feet, and probably anything else you

could imagine (except cancer). I cannot take the MTX, Plaquenil, or

any type of steroids, cortisone shots, etc. I do take Arava and so

far have not had any problems with it, but don't believe it really

helps either.

Over the last 6 years, I've been in/out of hospitals with CHF with

severe fluid retention. I can/could put on 50 pounds in less than a

week. Last October, I was once again discharged (after 3 weeks in

ICU) and met with the cardiologist the following week and asked

him " do I have to take all this (expletive)? At that time I was on

27 different meds a day and had 3 more heart pills put on me in the

hospital. His response to my question " Not if you don't want to,

but I do recommed.... " . So right then and there, i dropped all

these pills and am proud to say I take 6 meds a day along with the

remicade and insulin injections. Since I quit taking all this

stuff, the fluid retention is (hopefully) gone away, heart exams

show a somewhat normal heart (better than before) and kidney

functions are superb (Nephrologist doesn't want to see me back for 2

years --- yea!!). What I'm trying to say here, is double check your

meds and make sure they aren't interferring with each other. I feel

so much better, have a clearer mind, not passing out, and bought my

own little car. Gosh I haven't driven in 6 years and I'm trying to

get over that phobia. I lost the job I had as a medicaid auditor

because I was constantly on appointments or in the hospital. It

took all these years to get disability. Was denied twice by the

judge. The third time was the charm when I walked in with a lawyer,

oxygen unit and a cane. I highly recommend anyone applying for

disability to retain a lawyer for your own peace of mind. True, you

have to pay them, but only if they win the case for you. (I no

longer use the oxygen).

I know I've rambled on and on, but as I first said, it's been quite

a while since I've posted, but have read other posts. We are all

unique with our problems, and once in a while a light bulb goes off,

and we say " gosh, should I mention this to my rheumy? " So God bless

all of us for sharing in our misfortune in dealing with our pain.

My prayer for all is a pain free day on the morrow and everyday

thereafter.

Sharon W.

in Mossy Head, Florida