ATTN: MRSTYEDAWG

Discussion in 'Fibromyalgia Main Forum' started by waxdiva, Sep 13, 2006.

  1. waxdiva

    waxdiva New Member

    I live in the Pgh area and was wondering how you came to choose the FM clinic in Greentree?

    I contacted them and understand that they do not take any type of medical insurance and they were extremely expensive.

    Had you compared and contrasted other Pgh MDs before you decided on this one? What specifically did you like about this one over others? Which others had you considered?

    It would be very helpful to me if you could tell me about this place. Did they outlinedtheir treatment plan with you last month? Also, why do you have to wait so long for your second appt?

    Thanks, mrstyedawg.
  2. waxdiva

    waxdiva New Member

    What does that mean? Also, what does "OT" stand for?

    Thanks!
  3. waxdiva

    waxdiva New Member

  4. suzetal

    suzetal New Member

    To move your post to the beginning of the list.B or Bump .

    OT stands for off topic.

    so I'm giving another bump by answering your post.That also brings it back up.

    Hugs
    Sue
  5. mrstyedawg

    mrstyedawg Member

    Sorry I just got on line tonight. The only reason that I chose this clinic is because it is the closest to my house even though it is still a 7 hour drive. Because it is out of state my insurance will only pay 50% of the bill.

    I had my lab work done instate so my insurance will pay 80%. The reason it has taken so long for my second appointment is because it took me about a week after my first appointment to have my blood work.

    I had to drive two hours one way for my blood work, because the clinic wants quest to do the lab work. And the only quest lab in WV is two hours from my house.

    It takes about three weeks after the blood is drawn to get all of the lab work back. My first visit lasted about 45 minutes. The doctor looked at whatever work I had done in the past six months, we went over all of my symptoms. It cost 360.00. I purchased $239.00 of supplements. The doctor told me thatf I could get these online if I wanted to. He gave me a lot of supplements for energy, which is helping me quite a bit.

    The doctor thinks that I have hypothyroidism, hype(o)coagulation, hormone imbalance and toxins and viruses. I feel really hopeful, the first time in years.

    Did your appt. at Phil. go well?

    Hope this answers your questions. If not let me know.

    Andrea
    [This Message was Edited on 09/14/2006]
  6. mrstyedawg

    mrstyedawg Member

  7. mrstyedawg

    mrstyedawg Member

    bumping again
  8. mrstyedawg

    mrstyedawg Member

    bumping again
  9. waxdiva

    waxdiva New Member

    Thanks so much for writing.

    I live in Pittsburgh. I did call the clinic and was a little put off when they told me how much it would be. They also told me that they are not covered by insurance...any insurance. How often do they feel you would have to visit the clinic after you return for your second appt?

    One question: The doctor told you that you have hypothyroidism...how could he tell you that without doing a fasting glucose test (you have to do this out-patient at a hospital) or TSH blood tests?

    Also, the blood tests do not take 2 weeks. The doctor's office told me that it takes 2 weeks for the bloodwork to come back. I called Quest and they said it would be ready in 2 days. I went on a Tuesday and they faxed my results to me on Friday. Apparently, the 2 weeks between appts is for the convenience of the doctor.

    When you go to Quest, tell them that you want a copy of your bloodwork results faxed (if you have a fax) or mailed to you. They will have you fill out a release form and they will provide you a copy. That way you will have this info on hand if you should have to see another doctor. You can also do this with any of your doctor's files.

    I hope that they help you. I went to a rheumatologist 2 weeks ago and my follow-up appt is on Monday. Please let me know how your follow-up goes. Your clinic sounded wonderful, I am just wondering how they can promise so much. When you go to their office, are there other pts there to talk with?

    Thanks again and please let me know how you're doing with this.

  10. waxdiva

    waxdiva New Member

  11. mrstyedawg

    mrstyedawg Member

    The doctor said that from my symptoms he thought that I had thyroid disease. The test he did on me was different than the normal thyroid test. I can't remember exactly what he said but he had a reverse t3 t4 testing done. He said that the normal thyroid testing wouldn't always show the thyroid disease that you had to do the reverse testing also. I had meant to copy my list of lab test but forgot to do it. There was only one test that took 2-3 weeks to get the results back. Quest lab had to order a special vial for this test.

    The doctor nor I think that thyroid disease caused my problems, but rather is a symptom of my problem. I can remember the exact day I became ill. I was 19 years old and developed an Urinary Tract Infection. That was back in 1984. I was extremely ill and had to be took to the hospital. I never recovered from this. Because of this I think that I got some kind of bacteria or virus that did something to my autonomic nervous system. For the past seven years, new symptoms have appeared.

    I think that other areas and organs of my body are being affected. My appt. is Wed. I cannot wait to see the doctor but am afraid that I will be disappointed.

    There are other members of this board who has seen the Dr. in Pitts. and have given wonderful accounts of the help they are giving. One woman told me that he has given her her life back.

    I saw a segment of 20/20 about a Dr. Heffez in Chicago that thinks that some people who have CFS and Fibro really have Cervical Spinal Stenosis or Arnold Chiari Malformation.

    I drove twelve hours to see this doctor. I was getting to where I couldn't breath and just walking across the floor would leave me gasping for breath. And it felt like a band was around my neck choking me.

    When I had my MRI's done in Chicago, it showed that I actually did have Cervical Spinal Stenosis and a mild Chiari. To make a long story short, I had the CSS surgery and five days after surgery, I felt for the first time in 16 years that I could run and run and never stop. I could breath again, I was so excited and happy I cried of pure joy.

    Gradually, the breathing problems and exhaustion came back, but the choking band around my neck did not. I know longer have to take gasping breaths just walking across the floor, but I am still very ill.

    I went back to Chicago to see about getting the Chiari surgery (this is brain surgery). I thought that I was getting this when I went down there, and I was really exited.

    But, after doing a physical examination Dr. Heffez told me that he didn't think that the Chiari was causing my problems and he refused to do the surgery. I was so disappointed! It's really pathetic when a person begs for brain surgery. But this is the point that we get to after we have exhausted all other measures.

    Sorry this is so long.
    When did your illness begin and how did it begin?

    love,
    Andrea
  12. waxdiva

    waxdiva New Member

    Thanks so much for writing.

    I'm sure that this happens to you also...you put something away in a place that you are sure you will remember and when you try to find it you can't. After turning my house upside down since my first appt w/the FM doctor almost two weeks age, trying to find papers that had to do with my FM, I found a folder yesterday clearly marked "FM." The folder was on the bottom shelf of where I keep my computer papers!

    The reason I'd been looking for this FM file was it included a letter from my doctor at the Cleveland Clinic dated in 2002, which diagnosed me with FM. I wanted to have it with me the first time I saw the Pgh doctor, but will give it to him on Monday.

    OK, now to really answer your question...

    I was in a very bad car accident in 1984. I believe, however, that I was ill before then and the accident put the FM on a fast track.

    Two years after the accident, I started a new job. Thank God I had an understanding boss; I was forever going home because I had migraines. I also was admitted to the hospital and stayed for 7 days on the infectious disease floor; the doctors could not find anything wrong with me even though I was in pain and so fatigued that I couldn't move. Shortly after that I was diagnosed with CFIDS. I never should have been working in the first place and eventually quit because I simply could not do it any longer.

    In 2001, I had a disc problem and was surprised to find that I also had spinal arthritis. I saw a rheumatologist for the spinal arthritis, who, during my appt, starting poking me and it hurt so much that I yelled at him to stop. He told me that I had FM. I had another job when I was told this and again quit because not only was it painful to sit because of the disc problem, but I was extremely fatigued and just could not take working everyday.

    From '01 to the present, my back got better (thanks to a doctor at the CC) but the FM has increasingly gotten worse. I also started to get piercing, stabbing pains in my ear that come and go at random; this started about 6 months ago. After 4 doctor visits, they have concluded that the ear pain is neuralgia.

    I just saw an ad on TV for a FM clinic in Scott Twp.! It was a 412-276-???? number...no mention of a doctor's name. Is this the same one you are going to?? At least someone is advertising FM!

    So, that's my life w/FM up to the present time. I am very conflicted re work, as in my mind I am itching to work, but have come to realize that my body (or FM) is now in control.

    Again, thanks so much for the reply.

    I would love to hear from you after your clinic appt (or sooner), so please keep me posted on your progress and I will do the same.

    McLare....PS:

    I tried to take off the little icon w/the waving butt...I must have clicked it accidentally.
    [This Message was Edited on 09/17/2006]
  13. waxdiva

    waxdiva New Member

  14. WendyStoopy

    WendyStoopy New Member

    Boy do I understand. Chronic pain is such a quality of life stealer. And the never ending new and painful symptoms not only hurt in the presant but make it hard to make plans re: work in the future. I know I will probably need to go on disability, but I am 28 and sometimes that is very hard for me to accept at this pt, that I can no longer work (right now I am home with my infant son).
    Good luck,
    Wendy
  15. waxdiva

    waxdiva New Member

    Wendy,

    It is such an inner conflict when your mind tells you to do something and your body just won't go along. It has finally gotten through a tiny crack in my brain that yes, I would love to work, but how am I going to do that everyday or even part time?? And, at this point, I have to lie on my resume because my actual work history is terrible because the FM catches up with me and inevitibly I can't keep up the pace of working.

    You should feel lucky that you realize this early in dealing with your FM.

    MCA
  16. waxdiva

    waxdiva New Member

  17. waxdiva

    waxdiva New Member

  18. mrstyedawg

    mrstyedawg Member

    My appointment yesterday was very interesting. Alot of my lab work came back abnormal. This is what they found

    Epstein Barr
    Cytomegalovirus
    HHV6
    High Cortisol
    T3 Reverse (thyroid high)
    Prothrombin fragment (tissue oxyenation) was 417 extremely high normal is 41-37 in other words I am not getting enough oxygen moving throughout my system
    testosterone - low
    Natural Killer Cells- low

    My appointment was Very Very Expensive. The total was $1092.00.

    This included the following:

    Dr. visit
    Injection (198.00) Immunoglobulin 2cc for viruses
    Lumbrokinase (Boluoke) for probthrombin fragment - 96.00
    Maitake D Fraction for enhancing Natural Killer Cells 83.00
    Pro-Boost 79.00 for enhancing immune system and helps to rid body of viruses
    Rest and Restore- for sleep 27.00
    Transfer Factor 6000 150.00 teaches our immune system to defend our health better
    Anti-Viral 180ct. 99.00 treats chronic viral infections

    The doctor also put me on VALTREX- my insurance paid for all but 30.00 of this
    He put me on bio-identical cortisol, testosterone, andT3

    This has to be gotten from a compounding pharmacy.

    The good new is, this should be the most expensive appointment, he said that next month he will start taking me off of some of these supplements. And most of the supplements will last two months.

    I am just so excited to begin this process. He said that I would become extremely ill for 2-3 weeks while the antivirals bring the viruses out of my tissue. He again assured me that within 6 months I will be preCFS healthy!!! He started me on low dose of the Valtrex and going to slowly up the dose. At this point I am going to wait and see.

    If there is anythingelse you need to know just ask.

    love,
    Andrea
  19. mrstyedawg

    mrstyedawg Member

  20. mrstyedawg

    mrstyedawg Member