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discouraging visit with TMS doctor

Discussion in 'Support Subforum' started by mirepoix, Sep 10, 2015.

  1. mirepoix

    mirepoix Peer Supporter

    I've been battling pain for nearly two years now, on and off (mostly on). I have been to lots of doctors. All together a rheumatologist, 3 GP's, an orthopedic surgeon, four physical therapists, as well as a chiropractor, massage therapists, and a few acupuncturists.

    I've had two MRI,s one lumbar one pelvic. They showed mild DDD, L5/S1 herniation with some internal bleeding/hematoma.

    I've had pain in lower/mid back, pelvis, coccyx, si joints, left knee, neck and maybe a few other places. I was CERTAIN I was a classic TMS case and I wanted to just go ahead and verify this by seeing a real TMS physician. I booked an appointment with a guy who wrote a chapter of the divided mind and worked side by side with Dr Sarno at Rusk for several years.

    I thought it would be an immediate diagnosis, followed by encouragement to think psychological, not physical. This is not what happened. Instead, he said the internal bleeding is possible cause for concern, and referred me to a neurosurgeon to see if I need surgery. He also noted that the rheumatologist thought I might have something called Marfan's, which I had never heard of.

    Marfan's is pretty much a nightmare condition for someone with TMS who has a vivid imagination concerning their own pain. Basically, if I get a diagnosis it means my heart could rupture and any time, killing me instantly, and I can expect a life of episodic, vague musculoskeletal and connective tissue pain. The doctor assured me that neither he, nor Dr Sarno himself knew anything about or had any experience working with Marfan's and how it may interact with TMS.

    So now I am awaiting an appointment with a genetics expert to get bloodwork for possible Marfan's diagnosis (three months I have to wait!) and an appointment with a neurosurgeon to see if I need spinal surgery, (one month wait) all at the recommendation of probably the highest authority on TMS practicing medicine today. I was crushed.

    Wouldn't you know it, a week after hearing all this my back "goes out" again. I am here in bed, missing work, in agony, incapacitated for the first time in probably 8 months and I have no defenses whatsoever. In the past, I could take consolation in all my TMS literature and support, and I feel that has now been taken from me.

    Just looking to see if anyone has been through something similar. I just got all the wind knocked out of my sails.
     
  2. Anne Walker

    Anne Walker Beloved Grand Eagle

    Dear Mirepoix,

    I am sure any of us would naturally feel a lot of anxiety and fear under this cloud of uncertainty. I have had TMS for many, many years and I also had early stage breast cancer ten years ago. For many months I had no idea what the outcome would be, whether I would need chemo, if it had spread etc... A TMS doctor cannot rule out every potential medical condition and this does not mean that you do not have TMS. You are doing the right thing, moving forward and getting the necessary tests. I just recommend that while you are going through this, you continually remind yourself that they are just checking, and you have not been diagnosed with anything yet. Cross that bridge when you come to it. At this point you are only eliminating possibilities, and the only way to know for certain is to have the tests. My doctor ordered a glucose test today. That does not mean I have diabetes. Try your best not to put yourself through the worst case outcome while you are investigating. I know it is not easy. I am sorry it is taking so long to get the appointments. From the little I have read about Marfan's, it seems like a very difficult disease to diagnose and if you do not have a family history, I would really question and try to understand better exactly why the one rheumatologist suspected Marfans at all. I would also get a second opinion from another doctor that has some experience with Marfan's since the TMS doctor clearly stated that he does not. He just saw it in the rheumatologist's notes and does not have a way to rule it out since another specialist mentioned it. I don't really understand what the spinal surgery is for and it does seem like you need a lot more information before you get too distraught. I know, I know, it could be.... but it also could very well NOT be. Fear will only make everything worse, regardless, no matter what is going on. Your characterization of Marfan's is very catastrophic. IF you actually get diagnosed with it, then you can start to learn everything and talk to people successfully living with it etc. But don't unnecessarily scare yourself with the absolute worst potential outcome of the disease now. Be strong and as positive as you can be. Breathe. You are okay right now. That is all any of us have really have.
     
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  3. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Contact SteveO, you can do it through his website, he knows most of the TMS docs and their tendencies. To me the your dx's sound vague and precautionary, get a second opinion from another TMS doctor. Waiting months to see specialists would be agonizing, why does it take so long to see them?
     
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  4. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Hi, mirepoix. I was not familiar with Marfan's disease so I did a Dr. Google search and found some articles and web sites about it.
    This one is from the Mayo Clinic:

    Marfan syndrome is an inherited disorder that affects connective tissue — the fibers that support and anchor your organs and other structures in your body. Marfan syndrome most commonly affects the heart, eyes, blood vessels and skeleton.

    People with Marfan syndrome are usually tall and thin with disproportionately long arms, legs, fingers and toes. The damage caused by Marfan syndrome can be mild or severe.

    Treatment usually includes medications to keep your blood pressure low to reduce the strain on weakened blood vessels. Depending on the severity of your symptoms and the part of your body that's affected, surgery may be necessary.

    I hope Steve can give you some advice and also lead you to a TMS therapist.

    Anne Walker gave you some real good advice.
     
  5. mirepoix

    mirepoix Peer Supporter

    Thank you for your response. I am trying to remain optimistic. It really did not affect me too much mentally to hear all this and to be in this situation until I bent down and felt that old familiar twinge two days ago.

    I had been doing relatively well with low pain level lately, so I tried to brush it off and go about my business. but then I woke up yesterday, stood up and just knew I was not going anywhere. That pain struck full force, and I just collapsed. I am just so worn out by it. I'm here in my bed just afraid to move. Afraid of my own body. It's just so sad to me. I just picture that herniated disc bleeding into my spinal column, pushing on a nerve and I just can't overcome it in my mind. I haven't had this low back pain in a while. I thought it was over. I guess I just have to wait a month to see that neurosurgeon and see what he says. I'm almost hoping he does recommend surgery. I'm hoping he can just fix me and it was physical all his time. Because I've just lost my ability to fight it mentally for now.
     
  6. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    I recall a few decades ago Dr. Dean Edell a then popular talk show host was pushing and creating media hysteria about MVP, mital valve prolapse. My gf who was 6 ft . tall bought it hook line and sinker and thought she had it for years. The rest of the white coats bought into it too, why not fills up the waiting rooms. Years later it was debunked and you never hear about it anymore. Maybe marfans is MVP resurrected--I don't know, I'm only a tennis player--don't sue me for mal-tennis- practice--but I have a really good serve! I'm just trying to give you some hope that it may be more medical BS scare tactics to give the docs more power over us as they practice defensive medicine to prevent being sued for mal-practice and have their insurance rates go up. It seems if it were that serious they wouldn't be making you wait months for testing. It's unconscionable that they put you into a STRESS state that is NOT good for your MINDBODY health. That's why I avoid docs visits unless I think I'm dying, you go in feeling relatively OK and come out feeling like shit after they put the fear of G-d in you. Last time I saw Dr. Dean Edell, his face was at Walgreens on a line of eye-glass readers he was hawking.
     
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  7. mirepoix

    mirepoix Peer Supporter

    I like to think this is all true. I am so on board with accepting this sort of thing. It's just so devastating that the guy who helped write the book on tms, who has been working with tms for years examines me and says "hold on now, this might not be your problem at all." It really screws with your head because as we know accepting the diagnosis essentially is the treatment. How can I accept a diagnosis that a tms doc won't even give me?

    Part of what's so scary about the marfans stuff is that it's so vague. It could be or it couldn't be. It's like it's designed to screw with your head. Could be mild, could be severe. Could cause pain, could cause blindness. It's just like a made up curse. Bah I'm just going to try to stay calm and get through current bout of acute pain best I can. Hopefully few days only.
     
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  8. riv44

    riv44 Well known member

    I know an adolescent with inherited Marfan's. It is obvious. His dad was 6'7" and he is nearly 7 feet tall. Has great treatment and it can be controlled.
    When I am anxious, I get a lot of symptoms. I have had TMS all of my life, but only recently discovered TMS.
    It is INEXCUSABLE that the professional health community is not aware of this.
     
    IrishSceptic likes this.
  9. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I'm so sorry you are going through this mirepoix, it sounds like hell. I hear your discouragement. I'm sure I would feel the same, since I've fully-committed my own health to TMS theory.

    I think that Anne and Tom have given you great advice. It really does sound like there is a lot of CYA going on with these docs. Easy for me to say, though...

    That being said, even if you, God forbid, have some kind of condition, your knowledge of TMS theory can help you stay as healthy as possible with fewer drugs. I really believe that, and studies continue to show that patients who have hope, who are pro-active, and who are able to visualize a healthy outcome, do in fact have shorter healing times, more successful surgeries, and take fewer meds than patients with negative outlooks.

    And it is now standard procedure in the medical profession to be able to say that stress makes almost any condition worse, so it is well worth taking the time and effort to reduce stress - which we know includes the stress of emotional repression.

    It's not just a matter of "think positive and keep a smile on your face". Rather it's a choice you make to actively prepare your mind and then your body to accept and work towards a positive outcome. Mindfulness, meditation, and visualizations will all help.

    In other words, I believe that with my TMS knowledge, belief, and faith, I could recover faster from an injury or illness than someone with a negative outlook and a "THEY need to fix me" attitude.

    We're pulling for you, mirepoix, please keep us posted.
     
    riv44 likes this.
  10. riv44

    riv44 Well known member

    Well said. I really do see this as an educational journey. For me, the word "trust" resonates more than "faith." For me again, faith means believing in something whether or not you know it's there, and trust means exactly what Jan said.
    My husband made a "fatal" mis-speech the other day, describing "psychosomatic" as "not real." I called him out on that! Wow, I was angry, and I related the anger to something from my past.
    Psychological is real. And everything else---what Jan said. Jan is an eloquent representative of the community.
     
    JanAtheCPA likes this.
  11. riv44

    riv44 Well known member

    Of course, Jan "likes" my post.
    I think I will be in another place, with this new awareness more integrated, in 6 months--that is a good thing.
     
  12. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    LOL, Riv! But I very much appreciate it :happy:
    Yeah, and I like this, too!

    Did you read the new post that has been translated from Spanish? She said it took her five! years but she has succeeded and recovered!
    http://www.tmswiki.org/forum/threads/padezco-fibromialgia-severa.10053/

    Fingers and toes crossed for mirepoix.
     
  13. mirepoix

    mirepoix Peer Supporter

    Thank you for the kind words,

    I really do still think it's possible this is all tms. The timing is just too weird.

    One thing I didn't mention in my post is the reason I got a pelvic MRI is because I had months of severe pelvic pain while my back was feeling fine. So docs all tell me my pelvis looks fine but they noticed the herniation and hematoma at L5. Well, like three days later my pelvic pain is just gone like that. Couple days later, low back pain sets in suddenly and severely. It's like whatever part doctors tell me is fine will be fine.

    I had sharp jaw pain that resolved the same way years ago before I knew what tms was. A dentist told me my x Rays were clean and I never had it again from that day on.

    Either way, I just have to wait out the acute pain for now. Whatever it is, it really does hurt. I just hate the uncertainty.
     
    JanAtheCPA likes this.
  14. mirepoix

    mirepoix Peer Supporter

    Thank you for the support. I've been feeling a bit better today, spasming has calmed down and back is just sore now. Hopefully can slowly get into more movement and build more confidence over coming days.

    I want to get past this Marfans thing, I'm really starting to think it's unlikely. I'm 6'2 and pretty skinny, but that seems to be all doctor was really basing his suspicion on. That and a high arched palate. Who knows. I'm 33, I figure this is usually something that shows issues earlier in life if you've got it.

    I'm hoping that meeting with a neurosurgeon sheds some light. If he says discs don't look surgical and Marfans comes back negative I can hit the TMS route with full confidence.

    I hear you about the psychosomatic thing. The pain we feel might be psychological in origin, but the actual feeling of pain is about as real as getting hit in the spine with a baseball bat.
     
  15. riv44

    riv44 Well known member

    No matter what the outcome, definitely "hit the TMS thing" because it will change how you experience yourself. Also, "psychological" does not mean not "real."

    Dr. Martinez showed me two MRIs. One was a woman in her 80's whose spine was really messed up. But she did not have chronic pain. A 35 year old man with a spine that was in great shape according to the MRI was in chronic pain mode. Medical tests do not predict experience.
     
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  16. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    I love the reply by riv44. MRIs and Xrays may indicate something structural is wrong with us, but that may have nothing to do with our pain.
    As Dr. Sarno says, most pain is caused by our emotions. It is psychological. Doing the Structured Educational Program, free in the subforum of this web site, can help us learn the emotional causes of our pain.
     
    riv44 likes this.
  17. riv44

    riv44 Well known member

    I just read some of my writings from 2 or 3 years ago. I was in constant but shifting pain, and having emotional memories going almost back through my infancy. I wrote then about the flare-ups being emotional and physical. One thing would improve and another hurt. I ALMOST made the leap to TMS insight, but I didn't
    realize on my own that there was nothing physically wrong with me. I wonder if I ever would have gotten to this place. It was so random that I found Sarno's book. . I am not one to think that there is divine intervention but it was as if a hand guided me to pick it up.
     
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  18. David88

    David88 Well known member

    Hello Mirepoix,

    Your story of the doctor visit rang a bell with me. I spoke recently to a TMSer who saw a doctor, like yours a rheumatologist who wrote a chapter in The Divided Mind, who gave him the same negative response. Like you, he was sure he had TMS going in and was very confused afterward. I don't remember the doctor's name, but my friend was from the DC area. Sounds like the same doctor.

    David.
     
    Jason32 likes this.
  19. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    I would email SteveO, it sounds like a familiar scenario with a certain TMS doc, run the name by SteveO.
     
  20. riv44

    riv44 Well known member

    Mirepoix, are you feeling better?
     
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