I should have known

Discussion in 'Fibromyalgia Main Forum' started by lisjhn, Dec 10, 2002.

  1. lisjhn

    lisjhn New Member

    I'm finished crying for the moment, now it's time to look on the lighter side of things. My appt. with my internist/infectious disease specialist went as expected. Old school. Just wants to treat symptoms (funny cos my symptoms aren't being treated), don't know where the virus comes from, doesn't appear to want to know, not that any of us do, but face it, we have more information here than all of the doctors put together.

    I was finishing his sentences in my head as he was looking back at some tests done in April, saying, "well your ANA was negative".....(So that means no autoimmune diseases...)....."and your Rheumatoid Factor was negative"......(so no Lupus)....I mean word for word as I said it in my head.

    I just haven't found the doc that's willing to learn more about CFS with me and do the testing and try some of the possible treatments out there. Like guai (for possible reversal of symtpoms), doxcyciline (for mycoplasmas), Valtrex (for HHV-6). It's crazy. I'm willing to be their ginny pig, I'm willing to do anything. I have been researching and researching, I have files of information, but no one to help with the tests and to try different meds and what not.

    But he did do some bloodwork, CBC's, Sed rate, T-4, ANA, ALT, AST, HHV-6, some other things, even doing an AIDS test. So I'll find out by Monday and let you know the results. But he's already reassurred me that everything will come out normal except for the Hep C.

    I think it's been said here already but I think it's better not to go through the heartbreak of long-awaited appts. over and over again just to hear the same old story of that "no one knows how to treat it...can't help you." when they aren't even trying, and just save your money for the few people in the country that do know how or at least try to help. Forget begging for referals just because your insurance will pay for the specialist and just go for the people who do have an interest in the subject. If they are not actively researching the illness they probably do not know anything. You will have more knowledge than them. Save yourself the heartache.

    Finding a doctor to treat you is like winning the lotto, so if you've found one, congrats. For the rest of us, well, I still have my appt. at Harborview's Chronic Fatigue Clinic in August 2003, then I spoze spend thousands of dollars that I don't have on Cheney or someone. For all the new people just starting to get tests done and more info on your illness, I would go straight to him or one of the other top doctors on this DD instead of dilly-dallying around rheumatologists, neurologists, immunologists, gynecologists, gastroenterologists, pyschologists, pyschiatrists....

    At least ask them first off, before the anxiety kicks in as you're waiting for the appt. if they are knowledgable in this area and are willing to help you.

    I will end this post with an old Chinese proverb...
    "The person who says it cannot be done should not interrupt the person doing it."

    ~LISA
  2. lisjhn

    lisjhn New Member

    I'm finished crying for the moment, now it's time to look on the lighter side of things. My appt. with my internist/infectious disease specialist went as expected. Old school. Just wants to treat symptoms (funny cos my symptoms aren't being treated), don't know where the virus comes from, doesn't appear to want to know, not that any of us do, but face it, we have more information here than all of the doctors put together.

    I was finishing his sentences in my head as he was looking back at some tests done in April, saying, "well your ANA was negative".....(So that means no autoimmune diseases...)....."and your Rheumatoid Factor was negative"......(so no Lupus)....I mean word for word as I said it in my head.

    I just haven't found the doc that's willing to learn more about CFS with me and do the testing and try some of the possible treatments out there. Like guai (for possible reversal of symtpoms), doxcyciline (for mycoplasmas), Valtrex (for HHV-6). It's crazy. I'm willing to be their ginny pig, I'm willing to do anything. I have been researching and researching, I have files of information, but no one to help with the tests and to try different meds and what not.

    But he did do some bloodwork, CBC's, Sed rate, T-4, ANA, ALT, AST, HHV-6, some other things, even doing an AIDS test. So I'll find out by Monday and let you know the results. But he's already reassurred me that everything will come out normal except for the Hep C.

    I think it's been said here already but I think it's better not to go through the heartbreak of long-awaited appts. over and over again just to hear the same old story of that "no one knows how to treat it...can't help you." when they aren't even trying, and just save your money for the few people in the country that do know how or at least try to help. Forget begging for referals just because your insurance will pay for the specialist and just go for the people who do have an interest in the subject. If they are not actively researching the illness they probably do not know anything. You will have more knowledge than them. Save yourself the heartache.

    Finding a doctor to treat you is like winning the lotto, so if you've found one, congrats. For the rest of us, well, I still have my appt. at Harborview's Chronic Fatigue Clinic in August 2003, then I spoze spend thousands of dollars that I don't have on Cheney or someone. For all the new people just starting to get tests done and more info on your illness, I would go straight to him or one of the other top doctors on this DD instead of dilly-dallying around rheumatologists, neurologists, immunologists, gynecologists, gastroenterologists, pyschologists, pyschiatrists....

    At least ask them first off, before the anxiety kicks in as you're waiting for the appt. if they are knowledgable in this area and are willing to help you.

    I will end this post with an old Chinese proverb...
    "The person who says it cannot be done should not interrupt the person doing it."

    ~LISA
  3. Joannie

    Joannie New Member

    I want you to know how sorry I am to here your struggle. I know what it is like i have been going from Doctor to Doctor for a very long time. It just makes you want to scream at them to help you. I wish that these Doctors'in med school were made to come into these web sights and listen and read what we struggle with day in and day out. Then maybe they would be more apt to being more caring and considerate to us in their practices. I am the same way as you I can say word for word what the Doctors' are going to say also.
    I wish you luck and hope things get better for you. If you are like me I fall into a lull and then get back up and keep going again. That is the only thing we can do right? About the wait on the clinic being so far out. Call them on occation and tell them you want on a cancellation list. Ask if anyone has cancelled so you can get in sooner. I did that with Mayo and honestly they have alot of cancellations due to insurance problems and such. Never hurts to try.
    Keep you chin up okay.
    Joannie
  4. lisjhn

    lisjhn New Member

    Yep, in my lull mode now. Time for plan "Z". If I could only remember what it was..... Thanks for your input, by the way what did the Mayo Clinic do for you? Were they of any help?
    ~LISA
  5. Mikie

    Mikie Moderator

    The problem is that few PCP's have the time to specialize in our illnesses and the ones who do specialize are usually rheumies who really know very little. There are few docs who are keeping up with the latest in research and treatment.

    I did hear a physiatrist speak here and he really sounds as though he knows what he's doing. I think I'm going to ask my primary care doc for a referral to him.

    Love, Mikie
  6. Joannie

    Joannie New Member

    About Mayo... I have to be truly honest with you here. It is a three week program. I am from Iowa and drove over two hours every Sunday night crying all the way because I was leaving my hubby and my three children for an entire week. My only life support. I spent those three weeks in a Hotel room after the day. (It is outpatient.) The first thing they do is take all your medication. You will leave not having any medication except for anti-depressants. Thankfully I don't use much. I was told daily by everyone there how exciting this should be to finish because I would be done with the work comp stuff and to get on with my life. They released me two days early and had a functional capacity eval set up for right after. (Guess who paid them... work comp.) Now for my opinion about the clinic.. They do not teach you how to deal with life realistically and honestly they do not care period. I met some of the most wonderful and amazing people that I thank God for. They will be life long friends to me. We were all we had because all of us were from out of state. The most troublesome thing to me is how they sit there and give you all this knowledge but do not show you how to incoorperate it into your life. I have three young children I can't just sit down or go to bed or go for quiet time. I am a mother and a wife and no matter if i feel like dieing I still have to keep going. Anyway, I am babbling here. To sum it up not any of us in our group of 12 got anything out of there program. We called it a drug rehab not a pain clinic. When returning home we were all severely depressed and I am totally serious. It was a three week sheltered life and coming home and back to reality was very hard. It took me a long time to get through. To top it off and I hate Mayo clinic for this i swear. I went to my Spine specialist after being released and he said the Fibromyalgia clinic was really interesting and you learned alot from it right? NO, I DID NOT GET SENT THROUGH THE FIBROMYALGIA PART OF THE CLINIC. Oh, you were supposed to I had it in your order. Well, there is nothing more we can do for you. You need to deal with the pain and hopefully you are one of the ones that can. No diagnosis from him either, pain is pain no matter how you look at it he said it is just chronic pain. So, I am not impressed with Mayo or their pain clinic. Sorry to go on and on.
    Take care.
  7. catgal

    catgal New Member

    So many of us suffer needlessly from lack of knowledgeable, effective medical care~~and just as bad we are often humiliated by health providers in our search for help. It takes time and alot of endurance & moxy, but keep searcing for a physician that will LISTEN to you and HELP you. They are out there...just difficult to find.

    You're to be commended for all the research you have done. I know how weary and worn out we get doing all the leg work, and most of us have a PH.D. in FM by now, but learning is a way for us to be pro-active rather than reactive. We all deserve a good cry now & then to wash out all the frustration and angst. And then we wash our face, blow our nose, and keep going.

    When I saw the Orthpedist for my degenerative disc disease, I told him I also had FM. There were five interns following him on his appointments that day--"learning from him"--and he looked at all his adoring interns and said, "There is no such thing as fibromyalgia--I can show you on her MRI evidence of her degenerative disc disease--but show me evidence of fibromyalgia!"

    And besides wanting to slap him into tomorrow and feeling belittled and humiliated--I thought here this Specialist--this Orthopedic Surgeon is telling five future health providers there is no such thing as FM.....and telling all the other interns he has during his career that there is no such thing as FM--and I said just because you wear a white coat doesn't mean you're a doctor...and if you are a doctor what evidence do I have that you're a good one? I can't see that on my x-ray either.

    I went home feeling depressed, despondent, and weary--had a good cry, washed my face, blew my nose, and never saw that Orthopedist again.

    Do something nice for yourself this evening, give yourself some special pampering, and tomorrow keep searching for a good physician even while you're waiting for your appointment in August/03. Happy Hunting! Carol....



  8. BonBons

    BonBons New Member

    Well said. I may do the Cheney thing too if I get some $ - I do the same dilly-dally thing with the same dilly-dally docs also. It's very discouraging and exhausting, isn't it? My tag to your proverb: try a paradigm shift: if you think it can't be done, get out of the way of someone who is doing it. And thank God for all of you who are doing it for us with your research and posts. Be gentle with yourself. BonBon
  9. JaciBart

    JaciBart Member

    I see you already got a name of a good doc in Seattle, just wanted to tell you that Fred Hutchinson Center I believe is doing research studies in Fibro, also I am in Tri Cities, I have a Dr here who is very knowledgeable and does listen, understands a lot about fibro. I am not sure if insurnace is an issue for you (it is for me) but if you are able to come here I will gladly offer more info and I would put you up but we do not have room but I run a support group locally thru the Neurological Center (Center is funded by one of the local hosp) and I know I could find a good fibro person to put you up.
    Just a thought.

    Good luck,
    Jaci
  10. karen2002

    karen2002 New Member

    I went to an endocrinologists today----
    I think I told you before I was using a conventional med center to do my testing----bah.....on that ...i give up!
    I have had it---all these docs have got depression all over my records there....it wouldnt matter if i showed up beheaded....they'd diagnosis depression.

    Will just see the fm/cfs specialist....i found--even though its a four hour drive. i am wasting my time, money, and energy, elsewhere.

    Sounds like your appt. went similar to mine....so sorry!

    Hey is Harborview in Washington? You haven't been able to find any other fm/cfs specialists in that area? Thats a ridiculously long time to wait for an appt. Sounds a bit pricey too.....have you looked for a smaller practice?

    Karen
  11. lisjhn

    lisjhn New Member

    Thanks for your responses. It does get a bit overwhelming for us, doesn't it.

    Carol~ your orthopedist should be shot! To tell 5 interns that FM doesn't exist, oh my god. I'm glad you had the ability to talk after that and a good come-back I might add. I would be bawling.

    I have called Paul Brown, $375 for the first visit, not including meds and blood work. Insurance doesn't take him, or he doesn't take mine I mean. Same old stuff. I'm flat broke right now. I don't need to explain, you all know what the frustration feels like.

    ~LISA