should I keep insisting I want an MRI (brain)? Need help.

Discussion in 'Fibromyalgia Main Forum' started by aduck, Jul 10, 2003.

  1. aduck

    aduck New Member

    I went to a doctor a few days ago and she said she "didn't believe" in the findings that CFS/FMS patients had lesions on the brain. so...

    I'm supposed to go to a neurologist tomorrow. I've never even had any tests to rule out other medical conditions that may be causing my severe fatigue/weakness like lupus, EBV, MS, mild Addisons's, Lyme,

    what are some others, please, that I should be tested for again?

    Why do doctors tell me I have some MS symptoms but then never test me for MS, which I probably don't have, but I think I have a right to know.

    Does anyone with Medicare insurance received an MRI on the brain? Does Medicare not want to allow this test or something?

    My last doctor told me I shouldn't "go searching" for what's wrong with me, I should just try to get better by living a healthy life style and avoidance. I'm avoiding EVERYTHING and EVERYONE and have been for the last 10 years! I live at the ocean. Am alone most of the time, etc. etc.

    I guess I need advice badly on HOW to word my thoughts to this neurologist tomorrow.
  2. mamafurr

    mamafurr New Member

    i think you need to be tested for all of the above to rule out things. usually that's how they diagnose fm...with all of the symptoms also. maybe you may want to see another doc. why is she referring you to a neuro if she never tested you for other illnesses? i have a friend who is 50 just diagnosed w/ms...mild symptoms but never-the-less.

    you are batting a big 0 with these docs...avoidance? what the heck does that mean? and who cares what she doesn't believe? wow never ceases to amaze me. i don't know about the lesions either or whether an mri would do any good w/regards to fm. but maybe for something else?

    madwolf posted an article on here about "how to talk to your doctor"...go to search...type in his name... and look at all the posts he has posted..below his bio. it could be very helpful.

    also, i know nothing about medicare...yet..:) soon tho.
    take care.
    [This Message was Edited on 07/10/2003]
    [This Message was Edited on 07/10/2003]
  3. GooGooGirl

    GooGooGirl New Member

    I guess I was lucky, my neuro sent me for an MRI of my brain right away. Unfortunately, they did find a lesion, but when the MRI was repeated 3 months later, they did not see anything (not meaning no brain, lol, just no lesion!)
    I really think it's essential to have an MRI done. I don't know why some doctors are so hesitant, unless it has to do with your insurance, which may very well be the case.
    Good luck!
  4. aduck

    aduck New Member

    thanks for your help.

    I had made the neurologist appt. on my own some time back, the first doctor didn't refer me. I was "told" this first doctor I went to know a lot about fibromyalgia, so I wanted to see her before I saw the neurologist. But she didn't know much and told me she was probably going to refer me to someone else in her clinic who knew more about it.

    I'm keeping the neurologist appt. just because I did not care for this first doctor. Hoping he'll give me an MRI and othe
  5. momneon

    momneon New Member

    I am on medicare, I'm 47, and I had a hip and back mri, then a neck, head, and brain mri. The hip and back showed some damage in the lower 3 vertebra and some bulging in disks. The head and neck mri showed damage in the upper 3 vertabra. Since I didn't really like how little was said in the reports, my dr sent me to a spine dr. He looked over the mri's and told me I would always hurt, and that no amount of surgery would fix it. I have osteoporosis score of -2.44, and no one had any idea that I had it. Guess the muscle tightness of fms keeps me standing up straight most of the time.
    The brain mri should show if you ever had a stroke, or have alzheimers, or tumors. Mine showed thickening inside of the whole right side of my face from my eye socket all the way through. One side of my brain is really smooth with one deep wrinkle in it, the other side is all wrinkled like its supposed to be. They didn't want to talk about it except to tell me I am going to always have sinus and vision problems now. Without the mri's, I would have just kept getting treated bad by eye drs that can't find anything wrong and won't even try to understand. Because of the hip and lower back mri's, the ortho dr did some regular x-rays and found spinal arthritis also. Now with words like that, other medical people will treat you more kindly. You need to know so you can start getting treatment right away.
    I have medicare part A and B...if the dr orders the mrs's, medicare will pay for them. They paid for mine, and for both the doctors. I don't know what all just part A covers, so make sure of what coverage you have. I have other insurance, but it seems medicare is paying faster than the other ins. does.
    Good luck, tell the dr to look for everything in your head and neck, back and hips.
  6. pam_d

    pam_d New Member

    I can't advise you on the medicare issue, but I can tell you about my neurology experience. I went to a neurologist as my first specialist when I got FM symptoms (which at the time were mainly neurological---weakness, tingling extremities, etc). I quickly found out that my neurologist didn't believe in FM, and at first I resented the fact that she couldn't even wrap her brain around the possibility of this, however---in the end, I realized that she actually did me a service; by being a non-believer, she started searching for some plausible explanation for all this, and over a couple months, she did full spine (cervical, thorasic, lumbar) MRIs, brain MRI, spinal tap (looking for lyme), nerve conduction studies & a whole host of bloodwork----never found anything, and shipped me off to a rheumatologist in exasperation, but like you, I wanted answers----and I at least was able to have the proper tests to eliminate a bunch of things like MS, etc. You SHOULD have these tests, so prod this neurologist----and don't be put off if he/she isn't FM/CFS-aware at all, just proceed on; hopefully, you will at least get tests ordered for you that help pinpoint problem areas, or eliminate causes for you.

    Good luck & let us know how it goes....