Help need your advice on this one........

Discussion in 'Fibromyalgia Main Forum' started by daylight, Feb 1, 2007.

  1. daylight

    daylight New Member

    Hi all ,
    I know that I haven't posted in quite awhile. It's because doctors still don't understand what I have. I first start with dx. of fibro.,the FM? MS? then no FM probable MS . Now I has this doctor that I Hate!!!!! This doctor tells me yesterday that I have "somekind" of problem with the nerves is my face. Then he tells my husband and I that I may have several pinched nerves and will probably live in pain for the rest of my life "SO GET USED TO IT". After that he asks me what do I feel it is and what do I expect him to do about it? I told him that I don't know what is causing all this.
    Let me give you some background .
    My right side (legs,feet,hip,arms,hand face)numb,tremors,very weak,trouble walking without cane,red rashes,raynound syndrome,falling at times, Bad right ankle, headaches that last for days, chest tightness at night,sinusitis,reacurring infections,IBS,bladder problems,severe heat intolerance, double vision/blurred (ON),stiff in the morning and severe pain in legs/feet at night,hair loss,possible sezeres,vertigo/dizziness
    I am taking neurotin for nerve pain 1500mg uping to 2000mg.
    I get sick a lot.
    ANA test neg.
    MRI of spine showed bulge in my T3,T4 (I found this out yesterday) the MRI was done 6mos.ago
    MRI brain showed old nerve damage around right eye area.
    Psych. exam neg. no mental health problems (which really upset my doctor)
    He still wants me to take Cymbalta for nerve pain . I told him no I'm already taking pills for that.
    Then he brings up work. I said how can I work if I can't walk fifteen feet without feeling as though I'm walking on sheared glass. Not to meantion my memory problems,trouble writing ect.....
    Now he said that he is dx. me with atypical fibromyalgia? Just for now? First he changes my dx to prabale MS no fibro. Now it's abnormal FM?
    My husband screamed at me after this visit. My husband thanks to this doctor is not supporting me again. This doctor is convinced that I need to force myself to work or I'm just giving in. I force myself to work with a hateful boss for two years only to get fired.
    I don't know what to do next. This has been going on for years.
    [This Message was Edited on 02/01/2007]
    [This Message was Edited on 02/01/2007]
  2. fungirl2100

    fungirl2100 New Member

    You can be tested for MS. I had it done through bloodwork.
    That was first suspected amongst a whole host of other things that bloodwork also ruled out.

    Your doctor is rude, understanding & deserves to lose his or her medical license.

    As for your husband, I would like a good word with him. I have a wonderful husband & If I am in pain he doesn't ignore it. He keeps searching for a doc that will help.

    I have the most supportive team of docs around. My pain management doc & my family doc are bar none the best. My family doc was named one of Chicago's top doctors back a few years ago. He diagnosed me with bordella pertussis when others said I simply had a cold. I could have gotten seriously ill or died over it. I spent 6 mos on heavy duty otc cough syrup & never questioned me asking for a refill. The state dept called me to confirm my pertussis.I think the pertussis brought one my Fibro.

    The docs I have are the kind of docs you need caring & understanding of pain. You need one who believes in you.

    How does your doctor plan on treating you? What is the medical regiment?

    LOSE HIM OR HER NOW. They are several good docs out there. Don't stick with a loser because that is what you are used to.

    Nothing makes me madder than this topic. I am tired of seeing suffering people treated like garbage when they are as sick as they are.

    If there is anything I can do to help you find a doc in CA I will run it through my doc, whom most know is a doctor to see what we can find out.

    Send me a post specific to me from you about needing help finding a doc & I will do whatever I can to help.

    love-fungirl

    You hang in there. You have a right to enjoy you life as much as you can!! Too bad you are not in IL. I could totally hook you up than.
  3. AllWXRider

    AllWXRider New Member

    I would check for toxic metals using a Hair Analysis...insurance won't cover it since M.D. scoff at it but it is used for Forensic science (detective work) to look for poisoning. Toxic metal buildup can cause all kinds of neurological problems.

    Doctors are trained to treat symptoms, as an Engineer, we were trained in Root Cause Analysis. D.O. have a Root Cause training too.

    FM can also be flared by viruses. Lead & Mercury weaken the immune system. It would be nice to know what viruses (if any) you have, but since "you get sick a lot", it's a certain flag about your immune system being weak. Knowing what virus you have will allow you to attack it with herbs and Transfer Factors. Transfer Factors can target certain viruses.

    Also consider systemic enzyme therapy, "Forbearance" is testing out Virastop. Dr. William Wong N.D. likes Vitalzym. Dr. Wong says that systemic enzymes:
    Clean the blood
    Dissolve the isoprin coating on certain viruses
    Aid digestion
    Reduce inflammation
    Dissolve fibrin blockages (fibro + myalgia)
    Dissolve scar tissue

    It may be that you have scar tissue around the pinched nerves but a chiropractor might be of some assistance here in relieving the pinch.
  4. Hope4Sofia

    Hope4Sofia New Member

    I can empathize greatly with your dr frustration. I agree you need a different Dr and at the same time I know how discouraging that is. I have gone through many myself - some horrible - some helpful -but none magic. :(

    Your husband is confused, doesn't know what to think of this. He wants to believe you but has all this "evidence" not to when the well-trained Drs say things like that.

    I have a vey supportive husband and yet even he wavers at times. He tires of this and wonders if I could just turn it around somehow. I don't know what to say to that.

    Have you considered Parkinson's? What have you ruled out?

    None of us want to be DX'd with FM or CFS because we don't know what the H#!! it is! And neither do the Drs! SO we constantly search for proof - a legitimate DX because maybe then we could find help - or at least support.

    They give up on us so easily. If we don't fit the quick and easy answer we get set aside. I don't know what to do or say about this except understand how discouraging this is.

    Sometimes I fantasize that I will get well and become a healthcare provider to work with other Invisible illness patients to give them support and help.

    Much love,

    Sofi
  5. daylight

    daylight New Member

    Last night when my husband came home from work he apologized.
    He said that last night he was up think about want the doctor had said and it just didn't make sense to him. Then he told me that we will be getting another doctor before anything else goes wrong. I just hope that God will pick this next one out because I'm exhausted from all this.
    Last night my aunt took me out to see a concert and my ankle
    swelled up to three times it's size . I may have cracked it but it's hard to tell sense I can bare some weight on it.
    At least the concert was fun. Painful but fun! Got to see Steve Holi (hope the spelling is correct).
    thanks again,
    D.