Need your help!&%#@*&^^

Discussion in 'Fibromyalgia Main Forum' started by hazygal, Jun 23, 2003.

  1. hazygal

    hazygal New Member

    Tomorrow is my Neuro. appt. and I'm extremely nervous and i've got to get a bag of guts for this, but I can't stand doctors and the way they've treated me these few years with my Possible CFIDS. I was wondering if, during my visit I should mention possible other things I could have and/or suggest like antiviral treatment? Should I tell him even IF I think i've got CFIDS or not? I don't know if I should just mention my symptoms and shut up or not... I've got crashing fatigue, brain fog, vibrations in whole body, achy arms and knees rarley, when I try to talk about something it comes out stupid almost as if during the time i'm talking I partially spaceout. I get muscle weakness really, really bad...and a few more, but can't remember what they are... Now i've been getting headaches that are bad and last a full day or two without advil helping like it used to. Also recently (don't get too worried i'm going to take care of it ASAP) but it is like labored breathing and a tightening in my whole chest and I could juuuuust get my breath... When I get up to do something at all i've got to sit back down after a little while, 5 min. sometimes, because i'm completely out of breath... But the fatigue has always been absolutely horrible for me...It make me unable to relax... It is a very uncomfortable fatigue... I also have major trouble sleeping, and it's been that way for years. So what does one mention to his Neuro and my I even mention diseases and suggest treatments I've been researching or will this Doc. "who thinks he's a god, they all do" think i'm a hypochondriac or hysterical??????? Thankyou in advance for anyone helping me with this..... Hazygal
  2. klutzo

    klutzo New Member

    I guess if I were in your shoes, I would make a list of my symptoms on my computer, print it, and just hand it to him. That way you won't have to worry about getting tongue-tied.
    I would not suggest a dx or treatment until you see how he/she reacts to your list. Most Neurologists do not believe in Fibro, but I am not sure about CFS. Play that part by ear.
    I pray you will get a good one this time.
    Klutzo
  3. arts4you

    arts4you New Member

    Tell your doctor everything! Anything you suspect, anything you think you should be treated for, and anything you think should be made apparent to him/her. Doctors are only one part of our care. If we don't tell our doctors what is on our minds, what we think we might have, etc, etc, we are not "helping" them to discover what our bodies need. I know this from first hand knowledge. I'll also tell you this. If your doctor makes you feel stupid or like you have no business suggesting things, then you need to find a new doctor. I just flat out tell my doctor "I don't want to offend you by self-diagnosing myself, but I think we need to look at 'blah blah blah' or we need to try this type of medication, or so on." We have to live in these bodies, and if we don't take some control of how we are treated, it only leads to depression, so YES, tell your doctor how you feel, what you think he/she needs to look for, and what kinds of treatment you think you need. If he/she is any kind of doctor at all, they will listen to you and tell you why they should or should not do what you suggest. Hope this helps.
  4. suz41

    suz41 New Member

    Hazygal:

    Having been down the neuro route several years ago due to a seizure disorder and having burned through several neurologists I can really relate. This may or may not help, here goes: first bring a support system with you, particularly someone who has seen you on good days and bad days. I used to bring my husband who could describe my symptoms sometimes better than me. Make a list of your symptoms from the ones that bother you the most to the least distubing. I know Neuros can sometimes seem like Gods but they arn't being candid is relly important, remember its your body and you have the right to find out what is wrong. We all cant be hypos there are 3-6 million of us with similiar symptoms. When I first went in I asked right out straight what my doctors take was on FM and several years ago when my seizures were horrible I kept looking for a doctor who beleived that complex partial seizres existed. These days most neuros are up to speed in that department when they couldn't agree on anything. You may have to educate the doctor. Try to maintain focus by using your list and write down questions you have. I hope things go well. Keep us informed.

    Suz41
  5. elaine_p

    elaine_p New Member

    If you mention possible diagnoses (CFS), mention all that are possible. When I did this with my former doc, I mentioned AIDS, Lyme, Fibro, CFS, and several others, all of which had been suggested to me by other people after hearing my symptoms.

    I think my list got "lost" and isn't mentioned anywhere--she focused on the CFS and said I couldn't have it because my pattern of fatigue didn't match her other CFS patients'. (Well, I've got SOMEthing.) She even mentioned something in the chart note that I'd made a self-diagnosis of CFS, whatever she said sounded disparaging.

    A year later I was finally given a diagnosis of CFS by my next doctor, after a psych exam ruled out depression as the cause.
  6. HURTSALOT2

    HURTSALOT2 New Member

    Isn't it awful to have typed that in your post? I too, have been treated badly by some doctors. Not all doctors will treat you badly. The last Neuro Doctor I saw, I fired him. He is like a cancer, the worst of all doctors I have ever met. I wish you luck on this visit. But do not waste your time or money on a doctor who miss treats you. It does not help our health any to have a doctor treat us unfairly. Take care.
    HURTSALOT2
    [This Message was Edited on 06/23/2003]
    [This Message was Edited on 06/23/2003]