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gale Newbie Joined: 04 June 2005 Location: United States Online Status: Offline Posts: 1	Posted: 04 June 2005 at 10:04am | IP Logged Hi everyone.  Im a 45 year old female diagnosed 6 months ago with RA.  I have had scleroderma diagnoses since I was 20 years old with affects my internal organs as opposed to external being skin.  I have pulmonary fibrosis GI symptoms, fibromylagia.  I was not taking any medications for my scleroderma except nexium and vioxx.  It came as a surprise to me when I got the additional diagnoses of RA.  I am a RN. disabled at the moment.  Aprox. 9 months ago I had cervical disectomy C3,4,5, and a metal plate implanted.  I got hurt while trying to lift a patient.  I was in agony and receiving workermans comp and opted for the surgery.  What a dissaster.  About one month after the surgery things started happening to my body that I didnt understand.  I couldnt walk. Fluid filled up in my knees with pain unbelievable.  I was stiff and I could lift my body off the bed without help. I couldnt sleep or eat I lost 40 lbs in 2 months and I could not find anyone to help me.  My rheum. who I had been going to for several years was the biggest disappointment. I went to see him crying with pain and he told me that I had fibromyalgia and there was nothing I could do aabout it.  He gave me arthrotec and sent me home. I told him I think I have Rheumotiod Arthritis and he yelled at me and said that it was a serious accustation I was making and that he was the doctor and I was the patient. Wouldnt even draw bloods, didnt take me seriously.    I never went back to see him again. I do plan to tell him off one day.  I wish I could sue him for something.  Anyway I found a new doctor and was proplerly diagnosed.. I really shouldnt surprised because my mom had RA I just didnt think that I could be given any more stuff to handle.  The surgery on my neck was somewhat helpful but not totally because I believe I had arththrits all along in the neck.  Anyway because of my pulmonary fibroses I cannot take some of the new medications and old.  I currently on Immuran 50mg 3 times a day, Medrolpred. toatal 16mg a day and Remicaid.  Before the remicaid I couldnt walk. But just last week I had an adverse reaction and could not tolerate the infusion.  I cannot get the disease undercontrol at this time. Ill be good for about a week and then flare after flare after flare.  My mom died at the age of 59. She had methotrexate lung and was in clincal trials for humera when she died.  THen I had an Aunt die a year after mom was never diagnosed with any autoimmune disorder and when her autopsy was done she had pulmonary fibrosis. So I am very afraid that I too will meet the fate. I seem to be living my moms life. It may sound crazy but Its something you just know deep down inside. My auunt was even younger than my mom.  My doctor wanted to start taking Arava and I called the drug company and they did not recommend  it because of my pulmonary fibrosis.  I told this to my doctor and he said they really dont know for sure the effects with the lungs.  But its a chance Im not willing to take. Ive said too much I know I could go on forever. Im glad I found this page. __________________ gs
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Gale,

I had many of the same problems and frustrations  you have had  before getting an accurate diagnosis from a Rheumatologist.  I am a 50 year old female diagnosed with RA and fibromyalgia two years ago.  You will truly enjoy the people on the message board.  I just discovered them about a week ago and they have already helped me so much!  Not many people understand our disease and you will find so much support here.   I am a divorced mom with two kids, ages 9 and one 22 in her last year of college.  I am surrently taking Sulfasalazine 2000mg day, Lotrin 400 mg, 2x's daily, Tramadol for pain, INH for TB exposure, Prozac 40 mg daily for depression.  I am just now recovering from a really bad flare and had to take the Prednisone pack and have missed two weeks of work.  My health has gone so downhill the last two years that I am worried that I may disabled at some point in the future.  I deal with pain and cronic fatigue daily.  Today was the first day in almost two weeks that I felt like doing things around the house and cooking again!  I'm grateful and just hope it lasts!  I am so behind at work.   I hope things get better for you soon and you find a great doctor who LISTENS!  Good luck dear!    Karen

((Gale))

You certainly have a plate full of bad stuff that's happened to you.  I can very well understand the diagnosis nightmare as I had my disease nearly 10 years before I was given a diagnosis.  I also have thought of writing very "special" letters to docs that blew me off in the early stages of my disease process.  I decided nothing good would come of it. You were wise to change rheumys.

I come from a family of inflammatory arthritis sufferers.  My mother, her three sisters and my grandfather also had this crud in one form or another.  We have a strong history of JRA, RA, Lupus and all the other itises that seem to be there.  There is good news though!  Because of the suffering of our parents and grandparents, science has come a long way to address the concerns and treatments of these diseases.  Our chances are way better than the previous generation of finding a drug that will actually help us. Breakthroughs are happening everyday in the treatment of these diseases.  We've got to remain strong of faith and keep our eyes open for the latest studies that are out there.  We'll beat this thing one day -- really, we will. 

Hugs,

Janis

Welcome Gale.  I'm glad to meet you, though sorry it's under these conditions.  You will find a great deal of compassion and caring here, along with lots of helpful information.

I'm a 45 year old single mom, with 14-yr-old twin girls.  I was diagnosed with RA and Fibromyalgia 6 years ago.  I come from a long line of "itises" as well.  My grandmother died from RA when I was 2 years old.  It had attacked her organs as well as her joints, which is something that scares me.  But like Janis said, there's alot more knowledge and treatment options for me than there were for my grandmother, so I'm hopeful.

Take care.

Cris

Hi Gale, and welcome

You've certainly had a rough time of it. Good to see you handled that Doc the right way, nothing worse than an arrogant doc. I, too, come from a long line of autuimmune sufferers. Brother with RA, sister with Crohns, Uncle with Gout and an aunt with Lupus. On the bright side, even in the last 3 years, there has been so much change in how RA is treated, with so many new drugs coming on the market.

Hopefully you will find a treatment thatll suit you very soon

And once again, welcome.

Welcome Gale -  I am glad you like the large font also !!!  You have put my situation in perspective.  I woke up feeling very sorry for myself this morning and then I read your post and I realize how thankful I should be!  People here are absolutely wonderful.  I don't know what I would do without this board.  My significant other is out of town and I truly feel so isolated with ra.  People just don't understand it.  Good for you to know better than that doctor.  I never trust doctors.  They are human, not Gods.  You read the posts here and realize how many people were not given a proper dx.  I guess I am a lucky one?  I got a good rheumy I think early on and my dx was pretty conclusive.  WELCOME GALE

  HI Gale.. Welcome to the boards. Just wanted to say hello and let you know that my heart goes out to you. Just remember that they are getting better and better at RA management.Please let us know how you progress.

Take care and God Bless

Barb

Hi Gale sorry to hear you have so much going on. Hope you can finally find something you can take for your RA as well.

Welcome to the group Gale. I read your post in the introduction section...but wanted to respond here with the rest of the crew.

Sure does sound like you've been threw alot Sweetie....and I imagine you've got a wealth of experience to bring to our forum. We sure are glad you're here.

Don't be shy....

Lovie