Intro/ Rant on Doctors in Nashville, TN

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lynnintn, Mar 21, 2007.

  1. lynnintn

    lynnintn New Member

    Hi. Thanks for letting me join the group!
    Lynn here in Nashville, TN. I am almost 44 and have been diagnosed w/ FMS, autoimmune thyroiditis, bipolar depression, post-traumatic stress disorder (from domestic abuse) and antiphospholipid antibody syndrome. I am also an RN but am in the process of applying for SSD. On top of that, am in the process of a divorce which may be getting ugly, not because my hubby wants my 2 boys (ages 12 & 13 years) but over money and alimony.

    I am SICK and TIRED of being treated like a hypochondriac over this disease. Even though the American College of Rheumatology does classify FMS as a real disease, it seems like my doctors, family and friends (the friends I have left) just think this pain is all in my head and that I am a nut-case. If this is all in my head, why does my joint pain and swelling decrease after a Medrol dosepack or a cortisone shot? Why will my family doctor only give me 30 Ultram per month and no muscle relaxers? I cannot take Motrin or Aleve because it makes me throw up.

    My neurologist diagnosed this antiphosphlipid antibody syndrome (it causes blod clots and multiple sclerosis-type symptoms) and did repeat my rheumatoid profile this week (results are pending on the rheumatoid profile). He has been fairly compassionate and said he was going to send me to a rheumatologist after my labs come back. The rheumy's name is David Knapp, MD. Has anyone in Nashville seen Dr. Knapp before? If so, does he really believe that FMS exists and requires some kind of treatment? I saw a Dr. Jacobi once a few years ago and she charge me $400 to tell me I had FMS and sent me on my way.

    I know from my nursing background my best chance of receiving SSD is from being bipolar and having PTSD.
    I tried to kill myself twice in 2005 and had numerous psych hospitaliztions with ECT/shock treatments which have wiped out much of my long-term memories and I now cannot do my job safely due to memory, cognitive and attention problems. So my divorce atty. said to focus on the bipolar disease on my SSD application, not the FMS. He said FMS patients rarely get approved for disability.
    THAT IS SO WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    This pain is REAL! My joints visibly swell (base of my fingers, ankles/achilles tendons, elbows). I get painful cysts at the base of my fingers. My hips ache so bad when I wake up I can barely walk until I take a hot bath and Ultram and Aspirin. Despite being very physically active until 5 years ago, I played tennis, lifted weights, did cardio workouts 3-5 times per week since I was a teenager. Now I can barely lift a gallon of milk. My arms and hand go numb all the time. I drop things. I have tremors in my hands. I burn food all the time because I forget that I am cooking. I can only sleep because my psychiatrist has been kind enough to give me sleeping medication.

    I am thinking about ordering some pain medication off the internet. I have researched this and there are some legitimate U.S. pharmacies that have real doctors and require medical records.

    Anyhow, SORRY for such a negative intro post. I hope to get some treatment ideas here from you guys and see what does and does not work.

    God bless,
    Lynn
  2. suzette1954

    suzette1954 New Member

    He is a nut case. He was my first rheumy and is supposed to be the expert in our area but Pam and I have both seen him with the same results. 1st, he will order a sleep study and take lots of blood and the girl who tried to get my blood bruised my whole arm for 2 weeks. He is a nut and you do not want to see him. He will mention the easterseals rehab which I did and that was ok.

    Please do research and get your dr to find you someone else. I go to Victor Byrd at Baptist and I like him ok. Go to the search at the top and type in Pam. I cant remember the #s after her name but you can verify that she saw him too. I dont know who she sees now. I then saw Susan Jacobi who did not do much of anything but she moved out of state. Who is your PC?

    I recieved my SSDI in Nov after 2 yrs. I had been a Metro employee and was able to keep my insurance and went on pension disability so God has been very good to me. If you are going to apply for the SSD, I bought a bright red accordian folder and put every scrap of paperwork in it. I also made sure I got everyones name I dealt with along with their phone# on the outside for brain fog days.

    I recieved the disability for my depression and thats fine with me. I was just thankful to get it.

    Best of luck. If you want to talk, just put my name in the title and I will ck from time to time to see who has been contacting me.

    Suzette
  3. suzette1954

    suzette1954 New Member

    from Nashville is Pam11236 something. Try that and you will read all about Knapp

    Suzette
  4. pam112361

    pam112361 New Member

    Lynn,

    Pam here! I am in total agreement with Suzette. I was referred to Dr. Knapp because he was the fibro specialist in Nashville. He did get me to have sleep studies and get me on a CPAP machine for my sleep apnea. He also gave me a prescription for a muscle relaxer that works better than what I had taken before, but that's it.

    Other than that, the most I can say for him is that he nearly caused me to have a nervous breakdown after a visit with him due to his passing off all of my questions as "that's just your fibro." When I asked about "drugs" (please keep in mind that this was on paper so I would remember what I wanted to ask him about), he said that if I was drug seeking I should have just said so.

    For someone who was in the emotional and physical condition that I was in at the time, it was the wrong thing to say. As some people would say (and did), some patients react positively to tough love and others don't. I don't. I will not see him again. I rely totally on my PCP for my care.

    You might do a search for Nashville doctors on here. I know I've seen mention of several doctors at Vanderbilt that are compassionate and treat their fibro patients well.

    I wish you the best of luck.

    Gentle Hugs.
    Pam
  5. tngirl

    tngirl New Member

    Thanks for posting this information about this doctor.
    I live about 60 miles southeast of Nashville.

    I go to Scott Baker in Lebanon. I consider myself lucky to have found him. I was seeing him for degenerative discs, facets etc. He difinitely believes in Fibro. All it took was me telling him during one visit "I don't know what's going on, but I feel like pain monsters have invaded my whole body." He eventually diagnosed me with fibromyalgia. He is a physical medicine specialist and also specializes in pain management.

    I haven't seen anyone else for the fibro since he is willing to treat it. I've heard so many horror stories about the trouble people have finding a doctor who even believes in Fibro and will treat it.
  6. misskittycat01

    misskittycat01 New Member

    i am an rn as well with fibro and after 2 years i finally got approved for ssdi but it was only aftre i came down with the fibro that i was approved. that was in 2003. i first applied in 01 after a lumbar lam with fusion.. to rods and 4 screws... can you imagine working in an icu after back surgery? anyway after the surgery i continued to work in office jobs.. then when i came down with the fibro my lawyer said bingo! this is it... you will get it now, and after 2 years of wairing and working in pain i was finally made 100% disabled. i was first dx'ed by dr anna louise molette and now i see dr myers at cmc arthritis clinic- he is a rheumatoligist and also treats fibro- very nice person... also lynn.. have you ever worked at st thomas hospital? if so i think we may have worked together!
  7. misskittycat01

    misskittycat01 New Member

    what ever you do DONT go to Dr Knapp... he is wierd and strange... I took care of some of his patients at the now defunct Millers Hospital.... and whats more, he almost let me die in the ER one time........ oh oh.... sorry... I am being too neg. any way, try dr molette ( very understanding, will listen, ) and dr myers( up to date on fibro, has a fibro protocol) hope this helps
  8. lynnintn

    lynnintn New Member

    Thanks for the info. Why did you stop seeing Dr. Mollette? I will give her a try or the doc at CMC. I definitely have heard enough to convince me to stay away from Dr. Knapp. I never worked at St. Thomas. I have worked ICU at Vanderbilt and Southern Hills but that was years ago. I have been a disability case manager since 1992. But no more! I have also been diagnosed with this disease called Antiphospholipid Antibody Syndrome and my RA factor was borderline + last week. Hopefully this will help my SSD case. Hoowever, I have a feeling the bipolar depression, PTSD and history of suicide attempts will be what will help the most. Am praying about this daily.

    Glad there is another neighbor on the list and thanks for responding to my post!
    HUGS,
    Lynn
  9. hurtin4certain

    hurtin4certain New Member

    Lynn,
    I had a hard time at first getting treated for FMS and CFS. I found a wonderful compassionate doctor in Nashville. His name is Dr. Victor Byrd, he used to be at the Vandy rhummy clinic but started his own practice at Heritage medical group - connected to Baptist hospital. He was instrumental in getting my social security disability approved.

    Unfortunately there have been so many cases of abuse of the disability system in TN that according to Dr. Byrd 99.9% of all cases must go to the hearing stage - which can take from 2-4 years. You might also want to consider getting in touch with your State Representative. Rep. Jim Cooper was also instrumental in getting my disability approved AND getting my back payments and regular payments expedited.

    Doctor Byrd does not take Tenncare if it is your primary insurance. Here is his number. 615-324-1207

    Good luck to you!!!
  10. Jokerette

    Jokerette New Member

    I am presently making the rounds of the docs here. My case is a bit different, though - you have issues I don't, and vice-versa. My other condition is severe colitis. It makes taking any meds whatsoever very difficult indeed: I have wound up in the ER on fluids from some of them.<BR>
    <BR>
    I've had fibro for fifteen years now - very very long and boring story. In brief, back then no one believed in it - or the pain it causes. Period. I happen to have severe fibro, as many of you also do, I see. Back then, GODALMIGHTY it hurt. I went to doc after doc: tried pill after useless pill (some truly ill-making too.) Finally I went to a hematologist who put me on something I'd never tried: a drug with codeine in it. <BR>
    <BR>
    No, it didn't kill the pain... we all know better than that. However, it took enough of the edge off that I was actually able to go back to work, start walking again, etc. It was a miracle drug.<BR>
    <BR>
    Except I couldn't get it from anyone: for no apparent reason, either. They just simply refused. (The doctor who originally gave it to me refused to do it long term: in 6 months, the end.) For another year I went on - living mostly in my bed, unable to walk. Then I made that final decision. No more.<BR>
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    A thought occurred: I'd had a shrink after my divorce. Perhaps I'd better talk to him before taking drastic action. Thank God I did - he's had me on meds for 14 years now - until last August. Last year, the fibro somehow worsened. I was checked out, nothing found. My doc said I needed stronger medication than he could prescribe. OH no. Not going the doctor route again! I self-medicated with handfuls of Tylenol along with my usual meds.<BR>
    <BR>
    Yes, in August wound up in ER with liver issues from tylenol overdose. No more Tylenol, was the verdict. Ergo I'm back where I started 15 years ago. My doc insisted times had changed: I =must= make the rounds again, so I started with a rheum last week. She read my records and said she couldn't help me - but would send me to another doc and a pain clinic.<BR>
    <BR>
    That doc, Boomershine, is supposed to be THE Fibro man in these parts: he's in Franklin. I belong to a pain forum on my own board (only 30 of us, none in Nashville) who know my condition very well and realized I was in no shape to do research. They found this Boomershine on the web - and it didn't look good. However, there was an email address for him.<BR>
    <BR>
    I emailed him and got back the expected answer: no narcotics. But! For once I could really ask one of these doctors why on earth I couldn't have a med that worked. I explained I'd be happy to try any of the 14 other meds he said he prescribed: I also explained about the colitis. I then asked "if these meds don't work at all and I can't take pain meds, where does that leave me? Living in bed, being waited on by a girl who lives with me. No life whatsoever." I added that I truly don't understand why I can't be treated by something that is known to work, in my case. <BR>
    <BR>
    My doc tried to answer that question for me, but it made no sense. He says such things are sold on the street! For what reason? Are so many people in my kind of pain that that is their only recourse? If so, what about the rest of the treatment? I'm looking for nutrition aid, physical therapy, massage, and am willing to try anything new - realizing how ill it can make me.<BR>
    <BR>
    Ergo his response makes no sense to me. I'm certainly not looking to sell anything, for God's sake. I just want as much of my life back as I can get.<BR>
    <BR>
    If you don't require the same meds I do, Boomershine sounds truly great. He can take months to get in to see, though. You might want to give him a try.<BR>
    <BR>
    As for me, I've given my doc his requested month. I'll keep attempting doctors, pain clinics, whatever - for one month. That's it, though.<BR>
    <BR>
    No, I'm not terribly depressed. The pain IS depressing, but I'm on a new anti-depressant for Fibro: Vibryyd. It is wonderful, truly. Doesn't help with the pain, but whips that depression! I'm just a very logical person. If I had an animal in my same condition - there's no doubt what I would do for her. No doubt. Let her live the rest of her life in agony? I think not.<BR>
    <BR>
    I'll do no less for myself. No, not looking for "You have so much to live for.." because I do and I don't. I'm an author: 1 published one book, another one out two days ago. It doesn't matter, though, does it? Even if it winds up (by some miracle) on the Best Seller list, that will improve my life, how? Not one whit.<BR>
    <BR>
    I'm sure many of you are in my same state of mine (perhaps not to my extent.) It gets old FAST being told 'You're just looking for narcotics.' <BR>
    <BR>
    My response: of COURSE I am. So far, it's the one thing that lessens my pain to where I can walk. I'm willing to try any new drug whatsoever, but if they don't work or worse, make me terribly ill, what then?<BR>
    <BR>
    <BR>
  11. jaminhealth

    jaminhealth Well-Known Member

    so original poster may not be responding. check the dates....
  12. Jokerette

    Jokerette New Member

    A friend of mine referred me to this very thread. I never thought to check the dates. You are very kind indeed to inform me. <BR>
    <BR>
    Now I will do what I should have done in the first place: look around the entire fibro section.
  13. dbla1155

    dbla1155 New Member

    Wow I wish I would've found this board before all of you. I went to Dr. Knapp in 2004 after seeing Dr. Houston first.<BR>
    <BR>
    Dr. Houston told me he wasn't sure why I was even in his office even though my foot doctor had referred me due to symptoms of arthritis. He sent me to Dr. Knapp. Oh my goodness what a waste of time. I should post the letter here that I sent him after my second visit. <BR>
    <BR>
    On my first visit he diagnosed me with fibro and came in quickly and popped two shots in my hips. I had previously not had problems with my hips but have had since then.<BR>
    <BR>
    On my second visit he read me the letter he wrote my primary care physician. I asked him about filling out my paperwork to take disability retirement from my job , that way I could keep working but keep my retirement. He told me in his exact words " no find another job and keep on trucking". Before that his nurse chewed me out for being late for my appointment. I explained to her I had been sitting in the waiting room for an hour and was not responsible for the front office staff not doing their job.<BR>
    <BR>
    In short....DON'T GO TO THIS DOCTOR. HE IS NO HELP WHATSOEVER. If you know you have fibro find someone who will help you.<BR>
    <BR>
    Thanks,<BR>
    Deb
  14. jules56

    jules56 New Member

    Lynn I also Live in Nashville, TN. I have seen Dr. Knapp as a patient and he does acknowledge FM. He did diagnose me with FM but did not want to treat me. He suggested I read a book on FM and sent me back to my neurologist for treatment. However, Dr. Knapp did write a letter for my SSD case for the diagnosis required from a rheumatologist. So when you go, don't expect much sympathy, but understand your goal right now is to get all of your diagnosis' documented. Sounds like you have been to a lot of doctors and you are a nurse, so you know they have documented all of your diagnosis' and treatments. Get focused and get started on SSD with an experienced SSD local attorney. You use all of your problems together on SSD. I received my SSD in nine months. May seem long, but looking back and compared to some, not long at all. I am now seeing a FM Specialist that practiced and and teaches at Vanderbilt University. He has his own practice in Franklin, TN, called Boomershine Wellness Center, and still teaches at Vanderbilt University. He is an excellent Doctor that treats and understands every aspect of FM and with great respect to the patient and the disease that has no cure. However, he does not, at this time help in filing for SSD, but sounds like you might already have that well taken care of.<BR>
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    Maybe you need a specialist that can address all of your symptoms together and I would never suggest getting medication off of the internet. You and your Dr. become a team that learn how to manage your symptoms together. It really does become easier when you finally find someone who wants to help you and actually knows how to help you, and you have to want to help you too.<BR>
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    I know from experience the reality of FM and getting started with some real therapy is overwhelming, but make the first step! See the specialist and they will treat you and send you to any supporting treatment that is necessary. Do this for you and your children.<BR>
    <BR>
    And God bless you too! Hope I was some help.<BR>
    <BR>
    Julie<BR>
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