Which Dr. to see . . . serious lack in the medical arena!

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Feb 14, 2003.

  1. TerriM

    TerriM New Member

    I would like to hear from people on what type of doctor's they've seen and who finally diagnosed their CFS. I have seen a TON of doctors and no one has given me a "firm" diagnosis even though most everything else has been ruled out and I have all of the symptoms. My endocrinologist has been the most helpful, finally coming to the same conclusion as Dr. Paul Cheney in his Klonopin article (in the library). I wish there was a way to get help to people who take years to figure out what they have. I am staying in a small town in Tenn. briefly & had to get a urine culture done at the local drs. office. They told me they treat TONS of CFS patients (but they have no idea what is going on and don't know how to treat them!!!!) . . . basically they just blow them off. In my own experience either people don't know what it is or they think it is psychological/possibly an anxiety issue. I am usually a good researcher and here is what I've been through so far:
    (most doctors didn't even refer me on to anyone else!)
    Thought at first I had a virus that was hanging on so . . .

    Family Practice (3 different times) - must be a virus, it will clear up.

    Internist - blood testing, nothing so must be MS, referred to neurologist.

    Neurologist - MRI - No MS, I think you are hyperventilating. Take Elavil at night (small dose) - inadvertently helped me!

    Gynecologist - I had fibroid surgery just prior so she thought I may have blood clot. Referred to Pulmonologist for chest Xray.

    Clinical Psychologist - help in direction to drs. & coping -- BEST MOVE I EVER MADE. Still see her & she KNOWS it isn't psychological.

    Pulmonologist - No blood clot, no asthma (plus chest xrays don't show blood clots!) - notes read possible anxiety issue.

    Cardiologist - EKG, Echo Test both normal (possibly deconditioning? - but he didn't want to limit it to that at least)

    Allergist - No allergies (he didn't even test me - said middle-aged women get these type of anxiety issues - I'm 37 and how ridiculous of a comment is that????)

    Endocrinologist -- STill seeing him - he found insulin resistance & high cortisol, plus EDS genetic disorder & tons of other symptoms that someone cannot "make up". -- unfortunately he doesn't take insurance & I lost my job. I was pretty amazed to read Dr. Cheney's Klonopin article because this dr. after TONS of testing came to the same conclusion -- that it was neurotransmitter related/hypothalamus.

    Pituitary/Hypothalamus specialist - no actual hypothalamus disorder, just a consultation.

    Genetics Dr. - to confirm EDS diagnosis ("possible" because no testing available to confirm).

    Rheumatology - This woman said I have FM but I don't have the tender points???? and that CFS & FM are the same thing! Then she wrote that she wondered if I had a "significant psychological problem". All I wanted was to rule out autoimmune diseases.

    My company let me go without disability & I need some type of diagnosis for my attorney, but all I can find out is what I don't have & get stupid comments. I have a couple more appts. set up for now . . .

    Immunologist - I've had some immune testing, but I am going to talk to him about TH1/TH2 shift issue. That rings true with my symptoms.

    Infectious Disease - I'm going to get tested for viruses & mycoplasma associated with these diseases.

    Neurologist -- I'm trying to get referred to a different neurologist because I'm having severe reactions to cell phones, microwaves & CT-Scans -- I think it is immune system related, but I was told to try a different Neuro.

    Any advice on this???? I feel like I'm trying everything I can, but I can't get any answers except from the dr. I can't afford to go to! I've already paid over $7,000 in visits with him over several months time out of pocket!!!!
    Am I missing something I should be doing? Do most people have a good internist as their base of operations?? I have a Urologist also because I get a lot of infections.

    Any advice would be greatly appreciated. It is so difficult (as I know you can all relate) beging sick & really not being able to rest/relax because of trying to muddle through this whole mess. I need to find someone who will give me an actual diagnosis so I can get disability.

    Any advice on tests I need to prove disability?? I've heard tilt table test . . . Thanks!!!! Terri

  2. dlizard

    dlizard New Member

    I'm right there with you... I'm playing the cat and mouse thing right here too , not that it helps to know that someone else is getting the run around.... I'm an RN with 22 yrs of experience and the problems I have bear watching and some treatment would be satisfactory at this point too... your story sounds so familiar to me,,, only the names have changed and that seems not to protect the innocentLOL>>> I've got so much garbage in my files that isn't even close to what I have told people that it is scary... I applied to SS today and on the advice of my atty told them,,, " I'm getting the run around and without adequate medical care I cannot get well and return to work... if you HAVE a specialist that can diagnose me pelase tell me and send me.... I cannot find anyone that can do or say anything other than shake their heads,....I'll go anywhere and see anyone but rest assured that I am likewise at teh same time getting more opinions... so who's to say what doc is right...." blah blah..... my advice... play the game. plain and simple... persue what you know in your heart to be REAL problems and insist on adequate and fair treatment..... its your right as an american citizen.... isn't that what all this "fighting" is about..... it was sir winston churchill who said...." when you're going through hell , keep going".... he made it and so will we! Good luck!!
  3. LauraLea

    LauraLea New Member

    actually Dx'd me. But, I hated him and dropped him like a bad habbit.

    My PCP was certain it was FM but wanted me to get a second appion. She is great she is the one who I turn to with any questions.

    I'm sorry you are having so much trouble with this. It isn't fair that some doctor get it and some don't.

    Keep searching you will find a good doctor.
  4. RedB

    RedB New Member

    I went to Mayo Clinic and was diagnosed immediately. Luckily, I had only been to 4 other doctors before my dx.

    I really believe it is worth the trip. Of course, then they ship you home and you have to search around for a decent doc, but that a different story.
  5. TerriM

    TerriM New Member

    I thought going to Vanderbilt (I have a friend I could stay with here) was a good idea, but has not been at all. I am seeing an immunologist here next week that may be helpful. I am going back home to Maryland to go to John's Hopkins. The unfortunate thing there is that they do know some things about CFS, but Dr. Peter Rowe who has discovered a link between EDS (the connective tissue disorder I have) and CFS is a pediatrician . . . they have no drs. that treat adults for CFS up there. I'm going to see what I can find out there, though.

    Also, my endocrin. is actually good, but doesn't take insurance & he is from the Mayo Clinic. I think he really knows his stuff, but I can't keep going there. What a huge bummer!!!! Thanks! Terri
  6. aprilhuque

    aprilhuque New Member

    sometimes they are referred to physiatrist. See my other postings today in response to a request for who a physiatrist is . . .

    they will diagnose and treat with nerve blocks and physical therapy, but mine never would prescribe pain pills, so I got some from Pain Management and need to get them from primary care in the future, or neuro

    See a neuro who is a D.O, not the lousy MDs, but that is just my very cynical opinion. by the way, i have Kaiser and I am still alive!!!

    FMS/CFIDS/MPS/Occipital Neuralgia/TMJ, need I say more?

    Hope this helps,
    April Huque, M.A. (positive letters this time!)
  7. VenusFire

    VenusFire New Member

    I suffered for 5 years (since I was 14) and had all of my in-town docs and PA's tell me that it was all in my head and that nothing was wrong with me. Finally after insisting that there WAS something wrong with me, I was referred to a Rheumatologist who was able to dx me in the first visit. Rheumatologists deal with a lot of pain problems such as: arthritis, rheumatoid arthritis, lupus, etc. and can figure out what is going on more easily than a General Practice Doctor or a Physician's Assistant. Try going to see a Rheumatologist, if you need help finding one, email me: Venus_Fire1983@yahoo.com. In Alaska, my home state, I'm trying to apply for disability even though I'm only 19. Be sure to contact your Social Security office to get the paperwork ASAP 'cause there is A TON of it! Also, surf the social security website, it gives "their definition of disabled" :) Good luck!

  8. TerriM

    TerriM New Member

    Thanks for your suggestion. I just saw a Rheumatologist for the first time a couple of weeks ago. I have CFS & she tried to say I probably have FM although I don't have the tenderpoints???? Also she told me they are the same thing. Then she wrote a letter saying for my medical sensitivities I should do extensive physical therapy which doesn't make sense and that she wonders if I have a significant psychological problem (I have been seen a clinical psychologist for over a year to help me cope & find direction -- then I had NO IDEA what I had or what was going on) . . . the rheumatologist was worthless! I worry about drs. saying things like that to people they've only met for 5 minutes and putting it in their records . . . I have a pending lawsuit because my company/their insurance co. should be paying me disability. Take care and best of luck with the disability filing! Terri
  9. VenusFire

    VenusFire New Member

    I don't know what to say! It is hard for us to get the proper treatment. FM has so many symptoms that are similar with other illnesses. There are some days that my tenderpoints feel fine and can be touched without me screaming bloody murder. I noticed my flare ups got worse with the more stress and physical activity I took on. I guess it just depends on what city/state/country you live in to find the right type of doctor :) All that I know is that after 5 years of getting the runaround from General Practictioners(sp :)) Physican's Assistants, etc, I was so relieved to find a doctor who listened to me and actually acknowledged that it wasn't all in my head!

  10. Lendi

    Lendi New Member

    I don't have a lot of advice. I think you just have to "shop" around. My GP sent me to a neurologist to rule out neurological diseases. The GP insisted it was depression. The neurologist diagnosed me with CFS. My GP said CFS/FM was bunk and I didnt' sleep because of a childhood trauma, that I dont' know about and still insists on depression. I made my own appt. with a rheumy and saw him yesterday. Had absolutely no personality. He said I have FM, took another gallon of blood for testing and said to come back in 2 weeks and he was changing my meds around. So, who knows. I think it's just the luck of the draw, but I've noticed that a lot seem to be diagnosed by a rheumy. Now, I don't know what I have. Both I think. I really have more the characteristics of CFS, but do have tender points too. But, the fatigue is overwhelming and the pain I can deal with so who knows.
  11. gcalex

    gcalex New Member

    This thread raises a question I posed earlier but didn't get much response to, exactly what is it other than the vague CDC case definition that is the basis of an accurate diagnosis of CFS? I understand that for FM it may be the tender spots, but what about CFS? Does one have to have cognitive difficulties? Balance problems? Recurring flu-like episodes? Obviously it can't be just fatigue because that would be overinclusive.
  12. healing

    healing New Member

    Like another person here, I "crashed" and my OB/GYN sent me to a new doctor (I had just left my HMO). This doc is a D.O. She took one look at me, put me on Zoloft and sent me to a rheumatologist who was on the cutting edge treating some of these autoimmune diseases. Before I met with him, I filled out a very lengthy questionnaire. When we met and talked and he briefly examined me (fully clothed, I might add), he diagnosed me within 5 minutes: FMS and reactive arthritis.

    I feel extremely fortunate to have been diagnosed so fast. Even though I believe I've had the disease for many years, it wasn't particularly intrusive until that physical crash. I know many others have had much different experiences, and my heart goes out to all of you.