Had Dr. appt. today......what a joke!

Discussion in 'Fibromyalgia Main Forum' started by tiredTina, May 5, 2003.

  1. tiredTina

    tiredTina New Member

    I'm stuck in that dreaded HMO system, and my PCP pretty much told me I was crazy. He literally told me to go see a psychiatrist!!!!! I have something major going on with my hormones, and suspect thyroid problem, but TSH came back normal(AS WITH ALL TESTS I TAKE!!!!!) Some time ago there was a post here that mentioned the antithyroid or Wilson's, and it really sounded like me; so I did a lot of research and I SWEAR that I have it!! I just have to find someone willing to go the extra mile and do lots of not-so-standard testing(don't hold my breath, right?) I don't know how I'm going to get any answers having HMO.....and I can't afford to pay cash for a GREAT non-HMO doctor...it seems pretty hopeless right now. The jerk today told me that a lot of my symptoms could be due to depression....why the hell does he think I'm depressed??? It couldn't be from quacks who tell me I'm fine, it's all in my head, your N O R M A L........no, it couldn't be from that at all!!!!! I'm switching to a new PCP....maybe a woman....maybe that will help?? I don't know if I can stand switching every month until I find that right one. It could take all year, and my body is falling more and more apart everyday. I don't think I can do it, but I don't know what else to do unless a whole lot of money just fell into my lap. Thanks for letting me vent, if anyone else out there is going through this HMO bulls**t, please let me know how you're handling it!!
  2. billiegail

    billiegail New Member

    I am sorry to hear about your visit today. It seems that alot of people are told that and it is a crock of crap.
    I am not sure where your from, but you might want to consider going to a place like JohnSealy in Galveston, Texas. They do alot of research on DD like FM and they are based on your income. I know people personally that went there and never paid a penny and they had jobs. If they do charge, it is not much and they will see you even if you never pay.
    They are a really good hospital.
    Sometimes it takes about a month to get in. The easiest way and the only way to get in without a referral, is to go to the ER (go on a weekday morning or you will be there forever!) and see an ER Doctor. They will set you up with the specialist.
    I hope this helps
    God bless you
  3. kgg

    kgg New Member

    I am in the same boat as you. I have had to go outside the HMO to get help. I plan on starting the search again this week. And I like you, will keep changing every month until I find someone reasonably open minded. I am going to talk with the office nurse or office manager before making the appointments. I hate HMO's!
  4. IndigoSC

    IndigoSC New Member

    I know exactly how you feel, except that I am not even covered under an HMO..I have absolutely NO health insurance or coverage. Every doctor I see or med I'm prescribe I have to pay full price for out of my pocket. It's a really tough situation to be in, as I, too, cannot just go to 20 or 30 different doctors until I find a decent one (which I have not been able to do yet). I'm tired of paying hundreds and hundreds or dollars to be told that "it's all in my head" or "there's nothing we can do for you". It's very discouraging and of course makes me depressed often. It's as if doctors don't even care about you...and if the doctors don't care, who on earth would care about me? Unfortunately, it it not really an option to just go find another dr., as I said, no insurance, and too expensive. I really don't know what to do, and I seem to be getting more frustrated and more depressed everyday, as the pain from fibro seems to get worse each day. Isn't there some kind of help out there somewhere????

    Also very desperate,
  5. Notonline

    Notonline New Member

    Hmmm...I've been hearing this same old crap for over 6 years now. "It's all in your head"...I remember that as I limp up the stairs somedays, and my throat is so sore I can barely talk.

    "You're depressed...here have some Paxil/Zoloft"...trust me, I'm far from depressed, I may need anger management classes soon though.

    "Go seek counseling"...some of the counselers I've seen need meds more than I ever will.

    "You need to get more exercise, take long walks"...I'm really totally, totally exhasted, but I do try...if my IBS is in agreement at the time...that can make for an interesting trip.

    Cannot even begin to afford to pay to see a specialist if I still want to eat, and no way is my car (which has terminal PMS, and hardening of the arteries) going to travel over 60 miles round trip to do so, not even in my wildest dream.

    I'd scream but I'm too hoarse, so no one would hear me anyways. Last doctor I had was a woman, she was the worse one so far, so good luck. Read about the TSH test if you haven't already...you need T3 & T4 test too I think, sometimes TSH alone is not correct. Ask for T3 & T4 test around here and they all give you that glazed stare. I have to laugh and joke about all this...because if I didn't I would have gone crazy a long time ago.
  6. dolsgirl

    dolsgirl New Member

    and all others seem to be the same. I think that there's a lack of knowledge regarding our DD taught in med school. It's lacking beyond belief to say the very least. Until medical students are astute enough to look a little farther than the end of their professors noses, the boat will continue to sail as it is. I don't see anything really big happening in time for me. dolsgirl
  7. Dara

    Dara New Member

    something. Are you in an area where there are any Fibromyalgia Support Groups? The reason I ask, is if you went to a meeting maybe you could get a name of a good doctor in your area who treats and believes in FM. Just an idea!!

  8. layinglow

    layinglow New Member

    I was in the same boat---well actually totally uninsured--everything out of pocket. I did the major running from Doc to Doc only to hear the same things all of you above posted.

    Finally I hit rock bottom and gave up. After about two weeks--I decided I DID want to get better, and would do whatever it took to do so.

    I made lists of Fibromyalgia and CFS Specialists within a 200 mile radius. I made phone calls to them, and did interviews. I am now seeing with very good results a Doctor a days drive away. Yes, it is all out of pocket---but what is my health worth. Besides all the specialist I was seeing prior to him, like internal med specialists, endocrinologist, infectious disease docs...were all charging me $125. per 5-10 min. appts. Doing absolutely NO treating and giving me the "head case" or depressed lines.

    I pay $60. for a half hour appt. and can do 45 mins. for $80.....I never leave without having all my questions answered. He believes in FM/CFS, researches it thoroughly, has a large enough client base to add to experience, treats each as an individual, willing to experiment with treatment regimes....He is a D.O. so can prescribe conv. drugs, and uses vits, supps, and alternative treatments...the best of both worlds. I have gone to bedridden--to upright, and have managed or gotten rid of many symptoms. I am unemployed, but am able to sell enough craft items and such to pay for my visits and meds......I will do whatever it takes...to get better...and on the top of the list is not seeing docs who do not believe in these disorders...or even know how to treat them. Even if I did have insurance, I would still pay out of pocket for an advocate, and someone that was willing to treat me aggressively. After all, look at the yearly income I was losing being bedridden, and on top of that paying for medical assistance that was useless.

  9. TaniaF

    TaniaF Member

    I have a PPO and no better---it's not always the insurance--it's doctors in general. I have been to so many specialists and no luck. Even the immunologist said I have CFS and low IGg levels and chronic EBV but didn't suggest any treatments or support at all. So I ask, do doctors really help except for the flu or something? Luckily I'm on no pain meds to seek, just Xanax and my cardiologist gives me this script because my autonomic nervous system is sensitive. I haven't found one doctor yet that can help with nutrition. I guess I have to follow a protocol of one of the doctors on this site and follow their supplement list. Feels horrible to be on my own---but no doctor here will help with this DD.

    On another note: my TSH level goes very low like .2 - .3 which indicates hyperthyroid but my T3 and T4 are normal. The endrocrinolgist just gave me a Beta blocker for the internal shakes and said nothing else to do. If he would kill the thyroid with radioactive iodine he said I would go to hypothyroid and have to take meds all my life and have other problems. He also said that shakes could be from the ANS disorder. I'm stumped about thyroid, even though I have read articles about hyperthyroid the drs want to leave it alone. Anyone else in this situation?
  10. Mikie

    Mikie Moderator

    There is a check and balance even in the worst HMO's, except the staff models like Kaiser. You have the right to change PCP's. Call around and interview or stop into the office (better yet). Find out whether the doc is familiar with our illnesses.

    Your present doc will lose either his monthly per-capita income (bad HMO model) or he will lose the income from the pay-for-services income (better HMO model) he receives when he provides services to you. Either way, he loses and you can find a better doc. You can keep changing til you find someone you like. It usually takes 30 days to make the switch.

    BTW, if you ask, your doc must tell you how he is compensated and whether the HMO provides incentives (bonuses) to keep costs down. You can also file a grievance to the HMO and insist on getting proper treatment. The HMO must provide you the info on how to do this. Finally, you can file a complaint with the State Insurance Commissioner's Office.

    Like a lot of other things, in HMO's, the squeaky wheel gets the oil. You have to learn to be persistant.

    Love, Mikie
  11. tiredTina

    tiredTina New Member

    I am glad to have you all to understand my situation and to help me learn how to improve it! I do have one more question. How should I go about interviewing these new doctors? What questions do I ask besides their knowledge of fibro and related diseases?? I'm a very forward person, but I don't want to come off the wrong way and maybe scare the GOOD doctor off. I've never had to do anything like this before and I'm a little nrevous about it. I tend to get tongue-twisted and even my brain shuts down(what's left of it from fibrofog). I would feel more confident if I felt prepared and knowledgeable enough to do a battle of " are you qualified enough?" Thanks again!
  12. herekitty

    herekitty New Member

    Why not go to the psychiatrist? My lunatic PCP told me that all my problems were due to anxiety, and sent me to a psychiatrist. It was one of the best things I ever did. She saw me, wrote up a report that said my head was fine, but that my body was a mess, and told my PCP to get his act together and find out what was really wrong. That was when I got referred to a CFIDS specialist. In your case, psychiatrist's report in hand, you tell your PCP you need to see an endocrinologist. You have nothing to lose (except the co-pay) by seeing the "shrink".
    Kitty =^..^=
  13. Bambi

    Bambi New Member

    but I have a pain specialist and he is very kind, understanding and supportive. I was sent
    to him by a young female doctor whose mother
    also has FM. She treated my symptoms and got me
    under basic control but then shortly left the
    group she was in. It was mostly HMO's, I wasn't,
    but they were not happy with her prescribing and
    ordering tests like she SHOULD so she did her
    one year contract and RAN out of there. She had
    sent me to the pain specialist for the second
    opinion so I went back to him and he took on my
    case full time. I am severe with the pain and
    all of it, so all he saw was tears the first many visits, still does sometimes, and he understands. I'd look for a good pain specialist. They go under that title or sometimes even Sports Medicine. Don't give up!
    Hugs, Bambi
  14. Susan07

    Susan07 New Member

    I too am on HMO. I took my book and called every single doctors office and asked the receptionist and if she didn't know I asked to speak to the nurse to see if the dr. had any fibromyalgia patients.

    Recently my PCP wanted to refer me to a neurologist. There was not one on my list (I made 17 calls) who treated FM; so I called 7 rhuematologists before finding one who treats FM, then called my doc's office and asked them to refer me there. They said they would, so I have an appt. June 18th.

    In other words, make the calls first don't put yourself through "weeding out". Good luck.