How many have seen a neurologist?

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Mar 2, 2009.

  1. I just wonder and worry that too much is being put in the FIBRO box and not everything is fibro/cfs. If you have seen a neuro did they help you understand what is going on or run any tests? Did you find it helpful? It would be scary though but worth it if it helped answer some questions.
  2. stschn

    stschn New Member

    I have seen two but it was early on about 1989 or 90. No help there both said I was fine. The day before my me/cfs hit I was running a business that made over a million dollars a year. After this hit I couldn't even balance my check book for 20 years to say nothing else about what I couldn't do like read or remember directions (I can now thanks to Dr. Montoya and Valcyte). I know that there is a lot more out there now but as always we need to find someone who knows something about this illness. That in it's self is difficult.
    [This Message was Edited on 03/02/2009]
  3. ladybugmandy

    ladybugmandy Member

    i saw 2 neurologists in the mid-90's. they did nothing. one told me that the CFS would go away on its own and that he has never heard of anyone having it more than 11 years! i also saw one more recently - a reknowned memory specialist - who said that because i was diagnosed with bipolar disorder (should not have told her that!), i just need better psych meds.
  4. 3gs

    3gs New Member

    I have seen so many neuros Ive lost count!

    Told I have MS not MS Ms not MS-Parkinsons not yes not-lesions not big deal-ummm don't know.

    Helpful no not when it came to Fibro or CFS. Most were unknowing about it.
    Stopped going to them.
  5. TigerLilea

    TigerLilea Active Member

    At the recommendation of a dentist I saw a neuro for facial pain I was experiencing after having had a root canal done. As soon as the neuro learned that I had CFS, he immediately told me that I was depressed and of course "I 'thought' I felt pain". After that, he wasn't willing to do anymore investigating and sent me on my way.
  6. munch1958

    munch1958 Member

    They've all been a waste of time. They like to pass out "happy beans" (Anti-depressants) which have never helped me. They'll do a CT scan and a MRI if they think your symptoms warrant it. This may tell you if you have white matter lesions or MS type things going on.

    Other than that, they push Lyrica, Gabapentin, and Neurontin. None of these meds helped me at all. None of them did any digging as to the root cause of my problems which is what I wanted. Save your money and try to find an FFC (go for the testing but skip the supplements and IVS) or a holistic doc that works with CFS, FM or Lyme patients.
  7. loto

    loto Member

    Yes, I saw a neurologist, and he's the one that diagnosed me with FM. That was after I had an mri of the brain, nerve conduction tests, and bloodwork. He said when I was diagnosed last June, that I have "strong" fibromyalgia, which I take to mean that he is certain that's what is wrong with me. I find myself wondering the same thing you are though. Is that what is really wrong?? Anyway, I saw him for 2 follow-up visits after the diagnosis, and then quit seeing him. When I would tell him "new" symptoms, such as stomach problems, he just told me to see my primary doctor for that. Well, what I wanted him to tell me was if these other things going wrong with me could be part of FM. So, apart from the diagnosis, the neurologist I saw wasn't worth a crap!!!
  8. .....OMG- WOW! *7 years* this month. whew! wow. lol, sorry, you made me think, though, and, just, 7 years is

    We've been through A LOT together... and, while, we have discussed FM, it was only at the first yr or so's worth of visits... I'm fortunate- maybe... in that he never blames my symptoms on FM- ever. At best, he will simply say - I don't know what could be causing that"

    If he feels I need a newer, more current MRI, EEG, he orders them, if not, we just do check ups, to see how my Trigeminal Neuralgia is doing, as it has been the most important, and pressing issue of all, in the 6-7 yrs. After a botched surgery for the TN, in 2004, we realllllllyyy went through some--- stuff. Even though I never once ever- blamed HIM for that- I think he just felt helpless, and perhaps* even a bit guilty, for having referred me to the neurosurgeon (hackjob!)..

    I then had to go to Indianapolis, to have TWO "gamma knife surgery" procedures, within 7 months of that first horrible surgery, I went on the next 2.5 yrs constantly doing high dose steroid tapers, pain medication, and always my anti-convulsants.

    Anyhow, certainly more info than you wanted, I'm sure, I just wanted some to know that *some* neuro's, (educated/dedicated) ones, *can* be gold.

    Just like for some people.... rheumy's are 'angel's' for me, 2/3 of them, actually VERBALLY and EMOTIONALLY ABUSED me, so vulgarly, and unnecessarily, horribly... etc... that... they, along with some TERRIBLE neurosurgeon's, gynecologists, and 3 gastroenterologists, have ignited PTSD in me!

    That is no exaggeration, either... I was diagnosed by SSDI's neuropsych, as "having some aggression, as well as PTSD" ... and, that does not mean that I did not have things in my past that certainly set me up for it, (especially with men... but, I've had 2 very nasty female doctors insult me/cause me severe depression etc..) but,

    The many years of being shoved off (by my primary) to over 30-40 specialists, (ER doctors have been despicable as well- one, reported TWICE to the medical board), and being talked to in ways the medical board would never believe, even if they had been sitting right there IN the room, while it happened... obviously triggered that "aggression" , and set of PTSD out of 'nowhere' seemingly... it sucks.

    Anyhow, my neuro, for me, is gold... I worry to death about the day he may retire, and fear & loathe seeing anyone else in his practice.

    But, I hardly read posts about rheumy's, simply because they/they're treatments, don't really apply to me..

    I'm sorry you feel that your visit with a neuro wasn't worth a crap, in your words, loto...

    Honestly though, I think with the tests you had done, you got further than some did with neuro's on tests, etc... and, really, that's all a neurologist can do for you... I have learned that specialists ARE just that- they want to talk about things in *their* area, and their area only, so, i do sympathize with you feeling unheard,

    ("when I would tell him "new" symptoms, such as stomach problems, he just told me to see my primary doctor for that.")

    That truly is all he could do... it's up to your primary to run gastro tests, or send you to a gastroenterologist to investigate.... I hope those have since passed for you, but, if not, please DO pursue with your primary, that they be looked into. My sister's primary does his own colonoscopies etc.. and has now ordered an upper GI for her too..

    She was dx'd with bi-polar disorder probably 10+ yrs ago, and then borderline personality disorder, panic/anxiety, PTSD, etc 6+ yrs ago, and fibromyalgia in 08'..

    Best wishes to you all,

  9. "I just wonder and worry that too much is being put in the FIBRO box and not everything is fibro/cfs."

    I do agree there, fibrobutterfly, I've always said, that I would definitely recommend that EVERYONE with fibro- ESPECIALLY within the ages of "20-50" yrs old, but, I still say *everyone* should have at the very LEAST, an MRI done if possible.

    "If you have seen a neuro did they help you understand what is going on or run any tests?"

    Yes, he helped me/helps me, and ran every test under the sun, and repeats MRI's, EEG's as necessary, and ran an MRA last time (06' - due to 2 people in my family having/had aneurysms).

    Did you find it helpful?

    Helpful, yes, but, I suppose what does and/or *doesn't* show up in tests/clinical exam, though, doesn't it.. everyone's different. I showed brain lesions on my first MRI, at age 23/24 thus, (also on the report besides saying "due to patients age" it also added "and lesion location" "Multiple Sclerosis should be considered") and, so it was.. considered... to death, LOL... and, I've been dx'd, but tons of doctors, tons of times... but.... still dont' really care, lol...

    Honestly, I have always said, "I am just as sick, regardless of what anyone decides to call it." As slowly as my MRI's change, and very little, I've put it out of my mind... as I said above, the biggest thing he works on, is always my TN, as well as muscle spasticity, etc.

    It would be scary though but worth it if it helped answer some questions."

    Indeed... I do hope most, if not all, would try to get an MRI done... believe it or *not*... it was a crabby, mean, jerk of an SSDI doctor who actually ASKED ME if I had had my brain scanned before! I told my primary this, and she ordered an MRI on that visit,,, low & behold... it showed those lesions- I thought the SSDI doctor was using another 'stealthy doctor way,' to say I don't have fibro. Because, he did (wrongly) tell me "you don't have fibro"... because he pushed into my shoulders, and said "people who have fibromyalgia fly up off this table when that is done to them" to which I quietly replied, people in MY family with fibromyalgia,... don't "Jump" anywhere, anytime."

    Hope that helps...

  10. kat0465

    kat0465 New Member

    i just recently had a MRI done of my brain, my first. and it showed Multiple lesions, but they said they were from migrains( which i do have) but im wondering if i need a second opnion from a neuro doc, as it was my fibro doc who ordered it.
    she didnt seem too concerned,just said that we fibro/cfs patients do have these and they can really mean nothing. although i think lesions on anyones brain can't be good.also if i go to a neuro(another Bill) will they really do anything to help me??? i think not.
  11. Meg1710

    Meg1710 New Member

    Hi Loto,

    I noticed that you mentioned stomach problems! Get checked out for Gastroparesis (stomach paralysis). The best test is a Gastric Emptying Study. Also get a Gastroscopy/upper endoscopy done if possible to eliminate ulcers/erosions or hernias. An upper endoscopy will not diagnose Gastroparesis.

    Gastroparesis is an Autonomic expression of neurological stuff and he should know it. It can also accompany Fibromyalgia.

    Go to the Gastroparesis and Dysmotilities Association website at or directly to this brochure on their website which discusses Gastroparesis in relation to Fibromyalgia
  12. I am waiting to get a call from my primary dr to see if she refers me to a neuro. dr. or do a mri brain scan. I have been having my hand shaking and she first wanted to "watch" it but it makes me so nervous, its gone on for over a yr. I sure hope it isn't from the lyrica, I tried going off it, but OMG the bad head pain started which was the reason I started taking it! PROBLEMS, PROBLEMS! . But from what I read they see lesions in alot of people and still no real diagnosis or change their minds?

    I also have gastroparesis so loto get it checked out, it is miserable. When I get bad bouts of it I can hardly eat anything. Thank goodness for Carnation instant breakfast.

    thanks for the replies.
  13. emah

    emah Member

    I've been to a neuro and it was ultimately lifesaving. They found 5 aneurysms, one of which was on my brain stem. I had 3 brain surgeries in an 8 month period last year for three of the aneurysms. I was also told that I had had several mini strokes. They were in awe that none of them had ruptured. I have to have an angiogram in June, which I am scared about because I'm afraid they will find something else.

    I really need to quit smoking and have cut down considerably and I mean a lot. But I haven't quit, and I know its an addiction because I can't stand the smoke while I'm smoking them or the smell. (sigh)

    It has done nothing to help my fibro, and I've recently moved and trying to get into a doctor seems impossible. The move was sudden,so getting extra scripts was not possible.

    Anyway to answer your question, yes it was good that I went to a neuro. The 3 doctors that I saw were more than kind and one was even cute. "LOL"
  14. emah

    emah Member

    What is FFC? Is there a page here that gives a definition of all the shortcut names for things?
  15. shari1677

    shari1677 New Member

    Hi fibrobutterfly - I saw a neurologist about 4 maybe 5 years ago. She was the one who diagnosed me with fibromyalgia - within 30 seconds if I might add. She did say though that was her "impression" but she had to do a bunch of tests first to rule out other things, but in her opinion that's what it was.

    I had so much done - all the labwork you can think of, every vitamin and mineral tested, everything. I had the EKG and MRIs done - a multimillion dollar workup it seems.

    So yes - I belive that a neurologist is a safe bet.

  16. Janalynn

    Janalynn New Member

    I think seeing a Neuro is good if you have symptoms that are directly related to what a Neuro takes care of - that are also not something that is known to be Fibro related. If you are having unusual symptoms are do not feel right about something being thrown in the Fibro box, by all means one should see a Neuro (if neurologically related)

    These specialists are just that - they really deal with just their specialty.
    Just dealing with my Mom - we've had some terrible experiences in contacting doctors who we thought we should, and told by no uncertain terms that we are not to contact THAT doctor, but another. Some will not "waste time" on other issues. So normal that a Neuro may not handle gastro or other unrelated neuro issues.

    My GP handled my Fibro - meds etc. Truthfully she doesn't do much cause I don't think she or I know what to do. I do check in with a rheumatologist every 4-6 months to see if he thinks we're on the right track. I feel that he knows more about Fibro, the latest updates, treatments etc. He has a lot of Fibro patients, which I think is key.

    FFC -Fibro and Fatigue Center? I think........ =)
  17. emah

    emah Member

    Thanx for the info.