question re: docs & diagnosis. LOOOONG post sorry

Discussion in 'Fibromyalgia Main Forum' started by illumine27, Sep 20, 2003.

  1. illumine27

    illumine27 New Member

    I'm just wondering... as I'm "recently" diagnosed etc etc. (FMS/CMP) ...I've been down the road with the docs for the past however many years... this has been a HIGH stress morning & frankly, I cannot remember... a lot. Anyway. I finally found a doctor who would acknowledge a diagnosis from a FMS from a rhuemy... "acknowledge" meaning... proceed with me towards an actual course of treatment instead of just telling me to "learn to live with it." Sooo... my question is. The docs focused for awhile on SLE because of a bizarre rash on my face. Biopsied for skin cancer & it wasn't. Biopsied AGAIN (total of 3 chunks outta my cheek THANKS) for lupus. Even then... after sending the samples to some top specialists, all they could give me was "a best guess of discoid lupus (just the skin version)" but it was just a guess because it was "puzzling" even to them. It had "some markers, but not all & overall it was just plain weird." They wanted me to come back every 6 months to follow my case... but honestly? I felt like a guinea pig & I didn't want to be. Add to that, the fact that while I waited TWO WEEKS to find out if I was really SICK OR NOT... I researched Lupus in general & found out that... hey... my fatigue, my mind problems, depression, musculoskeletal pain et al was NOT normal... I mean, all the sudden I realized that this had sort of crept up on me until 3 years later, I was NOT the same person I used to be. I couldn't do the things I used to physically and mentally & here was a disease that named nearly all my symptoms. At this time I was living between my parents & inlaws waiting for a house to sell in another state before we could buy our own place. There wasn't enough room for all of us so my husband stayed at his mom's & we stayed there until it got too cramped (myself & 2 little ones) & then out to my folk's until we missed my man... etc. This was supposed to be a TEMP situation. We had a signed purchase agreement on the sale etc & well--imagine it fell thru at the last minute--AFTER we'd moved & gotten new jobs & so forth... and thus began a 2 1/2 year journey thru hell. 2 1/2 years of semi-separation of my family. And 15--yes FIFTEEN signed PA's falling thru for really MURPHY's LAW reasons. DUMB ones. This was a NICE house near the schools etc. Anyway. It was during this time that I developed this "rash" & started getting more & more tired till I couldn't sleep enough and so on... So I told my derm. this... that I was under a period of tremendous stress and could this have anything to do with my rash & the rest of the odd things I was experiencing... he... without asking ANYTHING about it almost laughed at me, like... what does a little girly like you KNOW about STRESS??? (I am 32, but I look very young. I'm a librarian & patron's ask me all the time where I'm planning to go to college after I graduate etc--really) Anyway. He nearly laughed at my HELLish stress & said... "thanks for sharing, but I seriously DOUBT it. But just (to humor you) why don't we send you to a rhuemy & get a 2nd opinion." Where I was given the once over by a very bored looking doc & told, "It's my best guess you just have FMS... there's nothing we can do..." You all know the rest I'm sure. LEARN TO LIVE WITH IT. He made it seem like it was no big deal. (2 1/2 years later I find out it kinda really IS...
    but anyway.

    My point is... I then bounced from doc to doc trying to get someone to listen to me when I told them how sick I was. I finally DID. But NOBODY has ever tested me for anything other than to rule out SLE (because of "normal" bloodwork only) ...I did some reading on MS &... imagine that...

    There are SO many diseases with such similar symptoms... and MS IS progressive and should be treated with a different approach and... is it NORMAL that noone ever really looked at me for anything else? I'm just asking because there were a couple of things on the MS society site that really touched home with me... and...

    Not just that, but I had an "episode" about a month ago... the problem I think is--the doc I am seeing, altho she is addressing FMS/CMP etc... she is my original doc (I moved & came back)... she treats my mom also & knows my entire family history (emotionally abusive father, mom attempted suicide etc) so... yeah. Depression/anxiety/alcoholism/OCD etc etc RUNS in my family. However... I spent the 7 years I was away in psychotherapy... learning cognitive behavioral therapy & coming to terms with my dad & my family history. I was doing OK... It wasn't until this terrible period of stress that I started to get so very sick. The dep/anxiety IS NOT MY PRIMARY problem. She keeps seeming to want to pin stuff on that. This episode. part of my fms seems to be chronic chest pain. I say chest, but it runs around my entire rib cage. SOMETIMES it IS in/around my heart. Sometimes it IS exacerbated by breathing. sometimes it's just that my ribs/nerves really really hurt. However, this time... I woke up out of a dead sleep while camping. I felt like I needed to vomit like RIGHT NOW. I stumbled out of the tent intending to make a run for the bathroom. By the time I got outside I was so weak I could barely crawl into the bushes... not wanting to mess up our actual site you know? I laid in the bushes, in tremendous pain, wishing I had the strength to puke because I thought THAT might make me feel better. I couldn't even be sick. I then crawled as far as my car, crawled into the car & sat upright in the seat trying to... I don't even know. The world was tilty, everything felt surreal, I was in a LOT of pain, I felt horribly sick, I was drenched in sweat, although I was freezing... & I could only think... I am going to die... this is it. If I was at home, I'd be nudging my man to call 911... but here I am in my car, a ways from our tent & I don't even think I can muster enough voice to wake him up from this far away so.. I am going to die. I laid there for a long time & finally fell back to sleep I guess. I woke up to the sun & stumbled back to the tent & slept & felt sick the rest of the weekend. I thought later... I ate something off... I had a panic attack (I've never had one, but know they can feel like that)... or whatever. I made note of it to mention it to my doc at my appt 2 weeks away. & spent the next 2 weeks in an even worse state of exhaustion than normal... but pushing myself onward as usual... My doc said it was an anxiety attack, asked how long it's been since I've had one like that and I said... "I have NEVER had anything like that happen to me. EVER." Well.. it was an anxiety attack.

    ...shouldn't someone test my heart... just to be safe since nothing like that has EVER happened to me before?? Especially since heart disease has killed most of my dad's side of the family... many uncles dropping dead in their early to mid 40's of massive heart attacks. My dad has had double bypass surgery & is on various heart/bp/chol meds for the rest of his life... anyway.

    I'm just wondering...

    if I am getting normal/appropriate treatment or if I should consider seeking out yet another doctor??

    I live in a small town & I don't even KNOW of anyone else better than who I'm seeing. And I wonder if I switch yet again... & have a doc order MORE tests... I wonder when my insurance is going to say ENOUGH already you hypochondriac!!??

    :(

    I am sooo tired.
    If you read this far. Thanks... sincerely. Any input would be greatly appreciated.
    ~illumine
  2. Susan07

    Susan07 New Member

    I too have had severe chest pains and been thoroughly tested twice in the last few years. Mine gets chalked up to my FM. However I think you should insist on tests due to family history. Oprah had a good show on that one time, how women's and men's heart attacks can be different. You should at least be tested to rule out that problem. Please take care and know that we are here for you.
  3. sujay

    sujay New Member

    So sorry I couldn't read your whole post, but couldn't sub for doc who's on the scene, and I've got to go home to cook dionner, but PLEEEEASE do so search on hypercoagulation and let me know if you have any further questions Coronary Artery Disease should be ruled out. I have a 49 year old female patient who was diagnosed as PSYCHOTIC. (I wanted to sue the ER MD for defamation of character!) Turns out she had Cardiac Syndrome X, which means the diameter of her coronary arteries is so small I'm amazed she could walk around at all without chest pain, but she was labeled a "drug seeker" (how many of you have heard that epithet before?) and her complaints were basically ignored. I've also lost at least one patient from pulmonary embolus, and I don't want that to happen to anyone else. It was a long time ago, before I had even begun to consider the possibility of hypercoagulation as a problem, but I hope she'd have a better chance of survival if she presented to me now.

    Please do the search I suggested, and think about how it might apply to you. You will also note I think there is a DEFINITE POSSIBILITY OF CURE FOR ALL OF US so be sure to let me know if you have any further questions!

    Best wishes,
    Sujay