It pays to go to a teaching hospital!

Discussion in 'Fibromyalgia Main Forum' started by stillfighting, Sep 3, 2003.

  1. stillfighting

    stillfighting New Member

    Well guys, I got the results of the bloodwork from my new rheumy, and he says I may not have FM. Instead, it looks like I have an autoimmune disorder that causes the lining of the blood vessels to spasm, causing a lot of the same symptoms, plus an increased possibility of nasty blood clots. I think he called it antiphospholipid (APL) antibody syndrome.

    What clued the doctor into doing the test was what he described as a mottled look to the skin on my arms and legs. This is something I never noticed, nor did any of my doctors in the 16 years I've been having symptoms. The only abnormal blood value they found was an elevated "Cardiolipin AB (antibody?) IGM". He has me taking Plaquenil, which is often given to folks with lupus (although he doesn't think I have that) to control autoimmune responses. Chances are 50-50 it will work, but that's better than nothing, which is where I'm at now. I'm also taking an aspirin a day for the clotting--so much for guai :). Anyway, I should know within a month whether this will help.

    I am so grateful my internist suggested going to a teaching hospital. Otherwise, this never would have been found. It just goes to show that you should never become complacent with a diagnosis that begins and ends with FM. Even if you do have FM, it doesn't rule out having something else that needs treatment!
  2. PatPalmer

    PatPalmer New Member

    Hi Stillfighting,

    Nice to read your post, and that you have someone with more knowledge than your average doc. But sounds like he`s only treating the symptoms, was he not curious to the cause of your autoimmune disorder?

    Just left me thinking that it`ll only come back.

    Digestive Enzymes & Bromelin would be much better than asprin too.

    Love Pat.
  3. pam_d

    pam_d New Member

    I'm sure you've said this countless times before, but I've recently been feeling well enough to go back to work (YAY!)---just don't have as much time to scroll thru posts as I did.....what brand/type of Bromelain do you use with your patients? Wondering where to get this...

    Thanks!

    Pam
  4. stillfighting

    stillfighting New Member

    Madwolf,

    Thanks for the additional info on hypercoagulation. I had asked Dr. Walitt about this, even brought in the article that was posted on this web site, but he says this is something different. I'm going to try the Plaquenil and aspirin to see if it works; if not, I'll try the bromelain. To me, it makes sense to try one strategy at a time or you won't know what works and what doesn't.

    After dealing with this junk for 16 years, I'm convinced that no one is certain what will work for each individual, and until the research is done to find the cause(s) of the symptoms, all the docs can do is treat the symptoms. Dr. Walitt told me that he is convinced that what we have can be caused by a number of different, not yet specified diseases, so I'm willing to work with him to help figure out what is causing my symptoms. Hopefully, we will be able to find something that will let us all resume normal lives!

    Hilary
  5. Mikie

    Mikie Moderator

    Thanks for the info. There is no doubt in my mind that many are misdiagnosed in the immune/autoimmune arena. I'm curious, since you did have an FMS diagnosis prior to this, do you have the tender spots? That is usually the hallmark of diagnosing FMS. Just curious.

    I'm glad you have a good doc who is taking good care of you. Please keep us updated.

    Love, Mikie
  6. stillfighting

    stillfighting New Member

    I definitely have tender spots. When I saw Dr. Walitt Tuesday, there were 12 of the usual 18. Some days it is more, other times less, but they surely are there!
  7. GooGooGirl

    GooGooGirl New Member

    Can you please describe the mottled look to your skin that you are talking about? I think my skin looks very blotchy and I've showed this to all of my doctors who say nothing about it. There is a teaching hospital not far from where I live and I may have to go that route next.
  8. sujay

    sujay New Member

    Hilary,

    So glad you've got a doctor working with you who's really going after a diagnosis. I think that is key. Of course, you can tell from looking at my other posts that I suspect most of us (the overwhelming majority, if fact) have a VARIANT of Hughes' Syndrome, or Antiphospholipid Antibody Syndrome. The mottled skin is called Livedo Reticularis (a lacy, red pattern), and I see it in many of my patients. I have one patient who consults from a distance, who had a positive ISAC test as well as long-standing, well-documented Hughes' Syndrome. In any patient I think it's best to leave no stone unturned in terms of making a diagnosis. One of the reasons I track this board is to be alerted to alternative methods that might bear further investigation, but it's important to take advantage of everything you can from conventinal medicine, and those of us who've found doctors to work with us are truly blessed. I hope you do well, but should you and your doctor reach a point where you're discouraged or not sure what to do or try next I'd strongly encourage you to look into the ISAC test and see if it helps you figure out what to do next.

    Best wishes,
    Sujay
  9. stillfighting

    stillfighting New Member

    Sujay has the description down for the rash. On me it is really subtle; in fact, I always thought it was spider veins. When I had a mysterious rash in the past, I was able to find a web site that actually had pictures of rashes, so if you look up "Livedo Reticularis" on Google, you probably can find a picture. Keep in mind, though, that they will probably show you a really bad one.

    Good luck with finding the right doc. Before making an appointment at the teaching hospital, make sure the rheumy you see has an interest in FM. Not all docs do; I was misdiagnosed for 8 years by a very reputable rheumatologist at another teaching hospital in Washington DC. FM simply wasn't on the radar screen, nor were possible alternatives.

    Hilary