Why Neuro,Oncologist,?

Discussion in 'Fibromyalgia Main Forum' started by puffy1, Feb 16, 2007.

  1. puffy1

    puffy1 New Member

    How do you get into see these specialist it took years of complaining about my symptoms before I finaly got sent to a rheumatologist I have never been refered to any other specialist.

    can anyone tell me why this is.

  2. NyroFan

    NyroFan New Member


    As you know, none of us are getting any younger.

    And many of us have gone from doctor to doctor.

    Do not feel alone. The group is always here for you.

  3. puffy1

    puffy1 New Member

    Thank you for your responce boy do I know it, my husband keeps blaming my problems on old age. its just old age he says.

    I say well then I have been old for over 10 years now he does not get it. I am 53 years old I never thought I would be feeling like this till much much older.

    Am I wrong maybe it is just old age now the doctors have wasted so much time on me that now a lot of it could be just that or maybe menopause.

    I have days when it is 60 degrees outside adn I can not get warm for notheing and then the next week it may be in the 30's and 40's and I am burning up and sweating a lot.

    But thi has been going on for quite a few years now.
    Menopause? or something else well I ever know?

    I only know that I have periods wher I feel almost human and I think this thing is finaly over and then I get knocked on my but and am in pain and sick for months.

    I am drowning in mendical bills as I have no insurace.

    so how do people get in to see these specilaist?

  4. NyroFan

    NyroFan New Member

    Puffy 1:

    I spent a ton of money until I got an accurate diagnosis.

    If you are able to spend the money it may be worth it.

    Also you can check above where it says 'Doctors' and you might find one near your home.

    Good luck.

  5. puffy1

    puffy1 New Member

    I have checked the doctors list there are none even close to me unfortunately.

    I don't have insurance so my options are limited even now we have a judgment against us and they are garnining my husbands wages becuse of medical bills we have not been abel to pay.

    I have applied for SSI and now awaiteng to the results of the hearing I had in Dec.

    but they sais that could take up to 16 months before I even know what they decided so in the mean time I pay out of pocket for every doctor I see.

    but most of the doctors bills are from emergency room visits and proceedures I have had to have done.

  6. suzetal

    suzetal New Member

    Yep I get confused real easy now.

    You say you do not have insurance.If you do not than you should be able to make an appointment with whomever you want.Reason is your paying for it.

    We need referrals for the insurance company's .That way they know the doctor is in there little network and there the ones that say OK.

    I might be wrong but like I said i get confused a lot.
  7. dononagin

    dononagin New Member

    Ok, I know that my insurance lets me self refer to specialists.. but most specialists will not see you without a referral.

    I went to like.. I don't know maybe 6 different doctors when I first got sick. Nobody knew what was wrong with me.

    I finally called my mother's oncologist told him my symptoms and he took me in. At the time I thought sure I was going to die (practically my whole family has died of cancer and he knows my risk factors). He ran a ton of tests even a full body ct scan. Turned out to be Mono/Epstien barr and then later when I didn't get better he gave me my first CFIDS diagnosis.

    The rest came in time.

    I was referred to my gastro because of rectal bleeding. I still see him for colitis and diviriticulitis.

    I was referred to my dermie for skin lessions.. Still don't know what they are.. still see her every 6 months.

    I was referred to my rhumie when my ra tested high. He confirmed Fibro/CFS.

    I was referred to my ortho-surgeon when I insisted on x-rays on my back, neck and hips.. (fibro is NOT supposed to be a progressive disease, yet my pain is worse daily.. turns out a lot of structural, degenerative problems with my neck, back and joints).

    So.. now I see 5 doctors. And I still don't feel like I have all the answers.

    All of my referrals have been because of a symptom or a test result. I asked for the referral to the gastro as well as the ortho.

    Good luck Puffy!

  8. puffy1

    puffy1 New Member

    Thank you all so much for your input. about the insurance and not needing a referal I did not consider that since I don't have insurance I may be aboe to refer my self, I well look into that.

    I have a new doctor now who is giving me more of the feedback I needed from my other docs. I have saw a gastrointernologist a coyple of years ago and had alot of procedures done at that time.

    they came up with barrets esphogus and fatty liver hiatial hernia pollups and hemriods.

    they wanted to do one other test but I could not afford to do anymore.

    I am hypothyroid have been for years now and I had epstien bar at one point in my life I was difinatley diagnosed with Mono in 86 thats when the real fatuige started and never realy went away.

    But I have never gotten a real diagnosis of ME/CFS only the fibro dispite the ongoing complaint of not being able to get enough sleep even if I take a nap for 2 hours I still feel like I need more sleep. and I get tired and exausted form the smallest of tasks.

    so I realy appreciate all of your comments I well talk to my doctor about rulling more things out. they have ruled out lupus lyme RA hepC so far and Hiv. so whats left?


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