It's worth it to see a specialist!

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Dec 11, 2002.

  1. klutzo

    klutzo New Member

    Just got more lab results from seeing the PsychoNeuroEndocrinologist.
    For 17 yrs. of having FMS, I've had Thyroid Panels and ANA's done yearly, always coming out normal.
    The specialist did some very unusual tests. I am told the results were about 20 pages long!
    He found abnormalities in my ANA pattern and in my Thyroid. The thyroid problem would explain why my cholesterol is so awful no matter what I do.
    I am trying not to be angry that this has been allowed to go on so long, and to do so much damage to me,but it's difficult.
    I hope none of you will take lab results for granted. If you feel something is wrong, trust your gut and keep pushing.
    Klutzo
  2. klutzo

    klutzo New Member

    Just got more lab results from seeing the PsychoNeuroEndocrinologist.
    For 17 yrs. of having FMS, I've had Thyroid Panels and ANA's done yearly, always coming out normal.
    The specialist did some very unusual tests. I am told the results were about 20 pages long!
    He found abnormalities in my ANA pattern and in my Thyroid. The thyroid problem would explain why my cholesterol is so awful no matter what I do.
    I am trying not to be angry that this has been allowed to go on so long, and to do so much damage to me,but it's difficult.
    I hope none of you will take lab results for granted. If you feel something is wrong, trust your gut and keep pushing.
    Klutzo
  3. karen2002

    karen2002 New Member

    Klutzo---I fully understand your position---I have been pushing for test after test. There comes a time though, and I reached it yesterday---when I said, enough is enough.
    I have spent over 25K since May---and I am still in the same place.
    I saw an endo yesterday---with great hopes---an earlier test (24hr. urine) had showed I was spilling huge amounts of calcium and phosperous in my urine. I thought, oh boy, parathyroid--take those puppies out--instant feel better.
    Nope, serum calcium not elevated enough. (Guess I will just keep a check of bone density--every once and a while-as that is where the leaching is taking place).
    After a very thorough exam as I was laying on the table, he asked, "has anyone ever mentioned fibromyalgia?" I almost sat bolt upright on the table. I never mention my fibro/cfs diagnosis to these "conventional docs". That's what has gotten the word "depression", injected all over my med records there.
    There seems to come a time---after we have exhausted our pocket books, our famililies, and ourselves....that we say, ok---this is it, most of my health problems are inter-related, and it comes down to this beast fms/cfs.
    I give! I declined the rheumy consultation, I declined the neprologist consultation, I told the lab to keep the bottle for the 2nd 24 hr. urine collection---thats it! I will just see the fibro specialists...and forget all the testing and searching....I'm tired...I'm broke....just treat my symptoms..
    No more, Karen
    [This Message was Edited on 12/12/2002]
  4. BonBons

    BonBons New Member

    Klutzo - never heard of such an animal - you did it again! Karen, sorry about your resources being spent; I don't think I have fibro, but I know I have chronic fatigue. I also have spent so much $ and time, I agree with you. I am now going to call a CFS guy 2 hours away because I'm so sick and tired of being sick and tired (not that those people are magic) and I need a strong case and lots of visits in order to get the SS approved. Take care! BonBon
  5. AJME

    AJME New Member

    Karen,

    I don't trust many doctors. Most doctors herd us in and out like cattle. Seems like we are just a number with means
    for them to make money.

    I try to find out as much as I can about my problems and then try to use the doctors like a tool to find out what is going on. Rather then the doctors using me to make money.

    In other words I call the shots. I will tell the doctor quickly what is on my mind and I will not take any meds or do any tests unless I think its appropriate.

    Thanks!
  6. klutzo

    klutzo New Member

    Karen - I am so sorry. I have reached this point many times, taken the respite I needed and then jumped back in to the fight. Take time to recoup your emotional resilience and then you should be able to get back to the search. If we give up, then what? You have my deepest empathy.

    Bon Bons - darned if your screen name doesn't make me hungry every time I see it! What did I say that you've never heard of? You didn't say what it was I should explain.... The type of specialist? The ANA test?

    The doc's office is calling me this afternoon to tell me what they want me to do about what they found. What I feel like doing is calling the Rheumy I've gone to for 15 yrs. and reaming him out! But, I won't do it.
    Klutzo
  7. idiotsinc

    idiotsinc New Member

    Long time no post, how is everybody
    I have an upcoming appointment to be tested by a neuropsycologist. They're going to test me for possible ADHD or other neurlogoical problems that may be causing or affecting my FMS. I was refered by a shrink through another doctor, not because they feel it's "all in my head" or that I'm imagining it but because they feel that it may be a correctable neurological problem, as some research has shown. I know some FMS/CFS sufferers look upon such ideas as with horror because they already feel people look at them as if they're crazy but from my research it's an area that must be validated or eliminated before your condition can be helped. And as a long-time skeptic it took me quite awhile to accept this possibility myself.

    Bob
  8. klutzo

    klutzo New Member

    Neuropsychological testing is definitely worth it. That's how they found my brain damage in the first place. The Neuropsychologist who did my testing told me that I had brain damage in a pattern that matched exactly with the injuries I suffered in my auto accident, and that I do not have CFS, even though I meet the criteria for it. He says the brain injury pattern that shows up in CFS is so distinctive, that he feels he can diagnose CFS just by seeing someone's test results. Hopefully, you will get someone this knowledgeable. If your doc knows something about this Biofeedback to retrain the brain,as mentioned in the article on the front page of this site, pick his/her brain and report back to us please!
    Best wishes with your testing,
    Klutzo
    P.S. You might want someone to drive you to and from testing. I had 3 hrs. of testing per day for two days and my brain was so fried afterwards, I didn't know if I was going or coming. They gave me an IQ test where I could not use paper and pencil, even for the math problems. I was so bug-eyed afterwards that I told the friend who had brought me that I needed a drink. She said, "but you don't drink"! I said "EXACTLY". Better safe than sorry.
  9. klutzo

    klutzo New Member

    That's the sound of me eating my words! Are there any true professionals left in this world???
    After the Nurse Practitioner called me this morning and scared me with the spector of not one, but two, autoimmune disorders, and promised to call me by 2 PM to tell me what's next....then I posted this.....and waited......
    I got no call, so at 3:30 I finally called them back, not wanting to go all night without knowing. I was informed that the doctor had come in this afternoon and told her there was nothing wrong with my test results, and that I do not have any autoimmune disease, there is nothing wrong with my thyroid, and 80% of people have ANA's that are slightly off like mine. In otherwords, "never mind what we said this morning".
    How in the world are we supposed to trust health professionals when they do stuff like this? I know most of you have been through similar things, so I won't whine any more about it. And these idiots wonder why I am moody!
    God, I wish there was some chocolate in the house right now! I could sure use a chocolate "fix"!
    Klutzo
  10. HOUSEOFBLUES

    HOUSEOFBLUES New Member

    I was once told by my doc that having Fibro is like being
    in "Limbo". There is something there but until it develops further , there's no way of knowing what it is yet.
    It could develop later into Lupus, or Scleroderma, or Rheumatoid arthritis, etc..or just clear up on it's own.
    That's why it's called the "wastebasket" disease.
    Some have been able to find the right combination of meds,
    some have done their own researching and come up with natural herb and vitamin treatments, and some are still looking.
    The only thing that's going to help us is more research and more training for doctors.
    I understand the dilemma. The only thing I don't like about it is the way we get treated as tho we are "Hypochondriacs". It's like we are living in the "dark ages". It hasn't been figured out yet and given a name, so therefore it doesn't exist? What a crock.
    Maybe someday someone will recognise that we have an epidemic here and put on a telethon to raise money for some extensive research........

    LOVE,
    HOB
  11. selma

    selma New Member

    But, Drs. push back too hard. Ugg!

    Love Selma
  12. karen2002

    karen2002 New Member

    Hey, I am sorry you had to go through this turmoil today! I understand this kind of roller coaster ride! You think there is hope---that some break-through has occurred--some solid evidence of something malfunctioning and perchance something that may fix or lessen the health problems.....and then you get the rug pulled out from under you.
    It seems to be the nature of the beast.
    Do something kind for yourself tonight!
    Best Wishes,
    Karen
  13. klutzo

    klutzo New Member

    for the kind thoughts. I guess we should all be used to these screw-ups by now!

    Jelly - read my post just above yours and you will see that the doctor later recinded everything that I'd been told, and I don't have any abnormal labs after all. They scared the heck out of me and then said "oops, we goofed". If you still want to know how I felt when I was told, I was thrilled that thyroid meds might be the answer to a lot of my troubles, but scared about the implications of the ANA being abnormal.

    Klutzo
  14. BonBons

    BonBons New Member

    Sorry I didn't answer your question - my computer died on me and gee whiz, did I miss it. I never heard of a psychoneuroendocrinologist. I just know that it sounds like another person I could surely use - I have hypothyroidism and neurological problems and depression.
    I quit the doc I saw twice. He took me off all of my meds (including my HBP med) and was in a major hurry to get me totally off my antidepressant and flexeril and xanax, which I only use when really necessary. I really was eager to get off some myself, but I had a feeling of being patronized and discounted again, so bye-bye to him. I read the article on the home page today about antidepressants interfering, and I like what someone here recently said about using the doctors as another tool. In my life God is the ultimate physician, and I am my own best advocate and intuitive last word. As I've said before, I've learned much more here than from many other sources. Take good care of yourself! Bonnie (darned if someone didn't send me truffles (groan) for Christmas, so I spared you the BonBons today)