Email from Rheumy (((UPDATE)))) PLEASE READ!

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Sep 12, 2006.

  1. lenasvn

    lenasvn New Member

    I previously posted about this short visit with a Rheumy (first one) where it seemed quite obvious that he thought I had CFS. He mentioned the CFS clinic they had at the hospital.

    He ran some labs (I emailed a response to ask WHAT kind of labs he did) and said there are no signs of systemic disorder, nor viral.

    I had mentioned PTSD in the medical history. He insinuated in this email that PTSD patients have similar symptoms as CFS patients. "There is no need to meet with you any more, can you please send me your physician's address?"

    I just posted a long article about Fibro, CFS and PTSD and there it's quite obvious that PTSD often TRIGGER CFS. I also found an article that stated that physicians tend to think CFS is somatic, and psych. health think it's physiological.

    Of course I sent the following reply to him;

    "Greetings,

    I appreciate you taking the time to reply!

    Is it possible to find out what labs where done?

    Is it possible this could be CFS or is that a poo-poo diagnosis in your view?

    Is there anything my Physician can do? My arms have not been diagnosed or tested to see what it is. I had to end 2 good professions because of my arms, and it would be nice to know what got me in this situation. Would that be the neurology department?

    I have had PTSD since childhood, how can "symptoms" develop a few decades later?

    I have been too ashamed to mention a saline breast implant I did 15 years ago. There is controversy whether this causes problems down the road (I just did some research on this out of curiosity), so I don't know what your stance is on this. These shells deteriorate over time (especially after 8-9 years), and there is surely an expiration date on saline. Could this be the cause of elevated Rheumatoid factor?

    Are we saying that this is "all in my head"?

    I hope you don't mind my blunt questions, I wish to have facts on the table!

    Many thanks for taking the time to see me and write me back!"

    I hope it won't be percieved as pushy, but I think he needs to answer those questions. He really cannot dismiss CFS because I Have PTSD. There have been no testing done according to SSI disability criteria for CFS. Therefore it can't be dismissed this easily.

    Am I back on square one now? I thought maybe he (like most Ph's) didn't like my State health insurance which is costly and timeconsuming and extremelylimiting in what they can do?

    Anywho, the kids are fighting, gotta go


    [This Message was Edited on 09/13/2006]
  2. CockatooMom

    CockatooMom New Member

    Oh my dear, I'm so soryy you are expreiencing this. I will keep you in my prayers.

    I'm in and out of message board since back to school.
    Take care!
    E
  3. mrdad

    mrdad New Member

    Sorry you are having such a difficult time with the Med.
    World. As I probably already mentioned, I also have CFS.
    I think that CFS is a result rather than a cause. I think
    may be you have the Horse in from of the Cart so to speak.
    "They" can't even really diagnose CFS as there is no Sci.
    way of quantifying it. It is a result of some unidentifi-
    able source. It would go away possibly, if they were able
    to correct the malady that results in the fatigue.

    I too, am trying to find the CAUSE of my CFS and then
    some possible treatment that may "cure" or lessen it's
    effects!

    Haven't had much luck, but I'm still trying.

    Take care Lena, (My $$ was on the bigger of the two
    KIDS)
    MRDAD
    [This Message was Edited on 09/12/2006]
    [This Message was Edited on 09/12/2006]
  4. lenasvn

    lenasvn New Member

    Mrdad, the little one usually wins,,,LOL!

    She is a feisty girl, 2 1/2 with claws. My son is a 7 year old sensitive artist. You can sort of figure out the rest.

    One a side note, I am going to keep fighting, and I'm not going to be so polite anymore. Demanding tests is what I'm going to do, and if my doc don't want to, I'll go to someone who will. Daggnabbit!
    [This Message was Edited on 09/12/2006]
  5. alaska3355

    alaska3355 New Member

    some good things about a doctor in Spokane...Dr. Wm. Correll. He treats CFS, and his wife has or had it, so he should be pretty understanding. He might be worth a try! Terri
  6. lenasvn

    lenasvn New Member

    Alaska3355- I sure appreciate it, I will try to find him.

    Asking doc's questions- I tell you one thing- I have not recieved an answer yet! He's not getting away, I waited for over a year to even get a referral to a Rheumy!!

    CFS is a diagnosis of exlusion. He first say I need the CFS clinic at the hospital, he later send this email saying that PTSD patients have the same symptoms. I'm sure they do, but not as intense! Research points out that PTSD often leads to CFS, if he was so "experienced" he shoud know this!

    Now I'm starting to fume again, gotta go get my son ready for school.
    [This Message was Edited on 09/13/2006]
  7. lenasvn

    lenasvn New Member

    I vented my conserns about my rheumy's dismissal of me as being PTSD symptomatic.

    He responded with the following:

    Dear Lena,
    I strongly disagree that it is PTSD. I would look into chronic infections (see
    attached information as Ms Word 9 rich text format documents). We have
    found that cases like yours almost always involve chronic intracellular
    infections (Mycoplasma, Chlamydia, Borrelia, etc.). They can be diagnosed
    and treated, but you have to have reasonable physicians with some
    knowledge or background.

    For testing we recommend Medical Diagnostics Labs of Hamilton, NJ
    www.mdlab.com

    Let me know if you have problems with the attachments.

    Prof. Garth Nicolson
    IMM
  8. boltchik

    boltchik New Member

    A friend of mine, who I used to work with, also had implants and then had them removed. She became so ill with chronic fatique, infections, and chemical sensitivity. She had to wear gloves at work all of the time. You should tell your doctor about it. If I were you, I would work all possible angles. Don't be ashamed, your recovery is more important! :) Saying a prayer for you, Kim
  9. lenasvn

    lenasvn New Member

    Thanks, Kim, I will. Many docs dismiss that they can cause any problems, I've read stories about women being sick for years in their quest because many docs tend to do this. Hopefully mine won't.
  10. lenasvn

    lenasvn New Member

    I was thinking I should call the lab there (it's 280 miles away) and aske them to send the form to sign.

    I got so frustrated, cried first, then I thought the next day:- No, darn it, you ain't gonna beat me down! I asked him some uncomfortable questions that he never responded to. That's wrong won't you say to not respond to a patient.

    Normally you meet with them and discuss the results, he just dismissed me and wrote that there's no need to go any further. Sucker. He should give the patient a chance to ask questions, especially since it's so hard to get in there anyway.

    Even Nicolson seemed frustrated when he said "you have to have reasonable physicians", LOL!

    PTSD should not be used against a patient. We are just like other people who develop diseases like everyone else. It is proven that "we" develop cardiac as well as nervous sytem disorders because of the chronic state the adrenals are in from PTSD.

    The tricky thing comes when you're going to explain one physicians crap-talk to another physicians who might be on the suspicious side (that you might be a malingerer) without sounding like you are a malingerer.

    Good heavens!
    You know the show "Mystery Diagnosis"? They should have a show ("Awaiting Diagnosis") where they show patients who have not yet recieved a diagnosis! Imagine those docs when the show guys argue the patient's case!

    Lets start one!

    Hey, we will keep at is as long as we're breathing. We don't have a choice.

    Many hugs!


    [This Message was Edited on 09/14/2006]