Finally Diagnosis after all this time,,,

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Sep 7, 2006.

  1. lenasvn

    lenasvn New Member

    Went to UW Physicians and saw a Rheumy. It is CFS as I suspected. He also dismissed my first and "fired" be me docs diagnosis of RA. Imagine I took Plaquenil for RA for 7 months and it made me super ill.

    He did a bunch of labs to find out what's causing my high Rheumatoid Factor now. He mentioned the Chronic Fatigue Center at UW Physicians.

    He asked me to email him in a week to find out the results.

    He was impressed by the extreme gravel in my knees, says he never seen such a young person with such bad knees (my mom had a hip and knee replacement, I guess I got the bad bones from her.
    Him and his assistant were both jirking my knee around talking about this impressive gravel,,,LOL!

    I said "well, I'm always happy when I am able to impress someone!"

    Of course I bawled some, I was tired from getting up 3AM in the morning to get to Seattle, and had no power to hold it back. he said he understood well that my situation must have been frustrating.

    We'll see what comes next.

    Many hugs

    Lena
  2. jane32

    jane32 New Member

    I am so sorry but at least you know what it is!!!

    Did he tell you how long you will have it or did he give you a treatment plan? I always like to hear what others drs. have to say.
  3. encantare

    encantare New Member

    I lived in WA and was undiagnosed, or misdiagnosed for 10 years! I had a pain doc there, (Paul B. Brown) but have heard absolutely wonderful things about a pain clinic in Bellevue. There is a woman I know that I can get more info. from (who goes to that clinic)if you'd like it. I lived on Whidbey Island so I had a long commute to Sea. too. It's hard to live near a big city, but not in a big city. Glad you finally have answers!
    Brynn
  4. lenasvn

    lenasvn New Member

    When I get the test results and all that he will give me a new appointment. I guess we will be more detailed then. I hope my doc will be more cooperative now and believe me when I say I can't work.

    I am curious too! I had such bad experiences from dismissive docs, I am just absorbing the fact that he knew what he was doing.
  5. encantare

    encantare New Member

    I'm on often, if you want more info. on WA docs!
    Take Care.
  6. jane32

    jane32 New Member

    I know what you mean that is a great feeling.

    I personally feel CFS is a bunch of different things that lead us to this point although there are times where I agree with the autoimmune part. However if I believe that then I will be sick forever so I still search for things to manage my symptoms. I know two people that got better around the 4-5 year...I am keeping my hopes up.
  7. kjfms

    kjfms Member

    Well I am so sorry you have it but I am glad you have a diagnosis.

    It sounds like you may have a very understanding physician (I keep my fingers crossed for you) and that the CFC he mentioned might be worth looking into.

    I am sending you very good thoughts :)

    Please take care of you,

    Karen :)
  8. mrdad

    mrdad New Member


    I am glad you finally got some satisfaction!! Hope you
    experience some improvement soon. keep us informed!

    Best wishes,
    MRDAD
  9. findmind

    findmind New Member

    Oh, good!

    Oh, bad!

    I'm so glad you found answers, so glad you don't have RA!

    So sad you have CFS, so mad you had to take Plaquenil for 7 months!

    So glad you were interesting to the dr; so sad I've heard that word too many times with no answers for what the reality is...

    You do what you must to take good care of you, ok? You already know from this board there are many ways to attack this scourge; may you find yours and feel better very soon!

    Love ya,
    findmind
  10. lenasvn

    lenasvn New Member

    Wow!

    You guys are amazing!

    You guys make me feel so much better! :)

    Many tired hugs!

    Lena
  11. lenasvn

    lenasvn New Member

    I saw Dr. Gregory Gardner.
  12. boltchik

    boltchik New Member

    Glad you got a diagnosis and can start dealing with the correct problem.

    I am going through the same situation as yourself. First diagnosed with fibro and most likely CFS. Now I have a high rheumatoid factor and they are sending me to a rheumatolgist. I think we spoke before. I don't know which I would rather have, neither!!!!! Did any of your drs. say if you have a high RF, you most likely have RA? I know it is an indicator for Lupus also, but I tested neg.
    for that. How do we know for sure what we have? I am confused, do you feel like you have your answers now? I hope you got some relief by getting some tears out and are feeling better now. I am praying for you. Hugs, Kim
  13. lenasvn

    lenasvn New Member

    Here are some reasons for elevated Rf factor:
    Does a high amount of RF mean that I have a bad case of arthritis?
    Not necessarily. While it is true that high amounts of this autoantibody are found in people with a severe, active case of rheumatoid arthritis, high RF levels may also result from Sjögren’s syndrome or other inflammatory conditions. Increased RF levels in your blood also can mean that you have endocarditis; systemic lupus erythematosus (lupus); tuberculosis; syphilis; sarcoidosis; cancer; viral infection; or disease of the liver, lung, or kidney, among other diseases. You may also test positive if you have received skin or kidney grafts from a person who does not have your identical genetic profile.

    Observe the comment viral infection. That could be EBV, Lyme, etc.

    I knew I didn't have RA. I knew it was something else, i believe it's viral in my case.

    A rheumy can run labs to find out WHY the Rf factor is elevated.

    I hope this helps!

    Hugs
  14. boltchik

    boltchik New Member

    I appreciate all of the information. Mine might be viral, like yours. I guess I'll know in a few weeks. I am afraid of a misdiagnosis, as you had to deal with. Well, I am just going to think positive. Hope you are feeling well tonight! Take care, Kim
  15. FOYBOYFOY

    FOYBOYFOY New Member

    LENA
    I HAVE SEEN 7 DOCTORS AND HAVE ABOUT 4 DIFFERENT DIAGNOSES(DX) I THINK FINDING OUT YOUR DIAGNOSES IS SUCH A HUGE STEP AND MANY OF US ARE STILL WAITING. WITH 4 DIFFERENT DX I FEEL I HAVE NONE. CONGRATS ON YOUR BIG STEP ILL BE THRILLED WHEN I FINALLY GET DX SO I CAN MOVE ON WITH WHATEVER I GOT------------GOD BLESS AND GOOD LUCK FOY
  16. mrdad

    mrdad New Member


    Just had another look at your Post from yesterday! Made
    me wonder if you've every had a Lyme test mainly because
    you're in the Northwest and possibly in the Woods at
    times(??) My Daughter has had it for years probably from
    the years we spent living in the Sierra.

    Just a thought and a curiosity.
    Sincerely,
    MRDAD
  17. lenasvn

    lenasvn New Member

    I think he is running a Lyme too. I was so out of shape I couldn't even comprehend what the lab sheet said. I have only been in the Walla Walla for 3 years, and my stuff started before that. However, I lived in SD for 5 years, and there are lots of tics there, and lots of deer walking right pass your house. We'll wait and see!
  18. mrdad

    mrdad New Member


    Hi Again,
    I'm glad he is going to do the Lyme test. I'm having
    the Igenex lab do mine but I haven't been able to put
    a day together to get there. Have all the paper work
    from my Doc. When I lived in the Sierra, I use to take
    ticks off my Animals very often. Luckily my wife had
    been raised on a Nev. Cattle Ranch and educated this
    City kid about lots of "stuff", including ticks!

    Keep that great courage up, OK?
    MRDAD
  19. sisland

    sisland New Member

    Not Fun getting a CFS diagnosis! sorry to hear that!! But now you know!!,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,You are not alone on the gravle in Knee thing! I've had it for years too! sounds funny huh! years ago my Doc gave me the medical term for it but I can't think of it now!!,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,It's not Painful at all. is yours??...........................Hugs......Sydney
  20. lenasvn

    lenasvn New Member

    Sisland- No it's not painful, but I wonder what the heck is going on in there? The mobility is getting fuzzy. My mom replaced her knees, wonder if this will eventually lead to that.

    FOYBOYFOY- I know, it's like you say- it's a "no diagnosis" to have the wrong one. And if you need to apply for SSDI you can't. You won't show the symptoms of the faulty diagnosis.

    I had issues with an office who wanted to know how sick I was, they went on my RA diagnosis since that was all I had, not my fatigue, postural tachycardia,etc, so of course I had hardly any signs of RA- and was in their opinion ready for fulltime work!

    Mrdad- courage or foolishness- either way it brought me forward,,,LOL! Thanks for the encouragement. This diagnosis part was my biggest problem. I've been sick for too long and have just gotten worse. Now we can look in to other possibilities, and I can even start to figure about SSDI as soon as I've spoken to Dr. Gardner next week.


    [This Message was Edited on 09/08/2006]