What symptoms prompted you to see a Neurologist?

Discussion in 'Fibromyalgia Main Forum' started by llama, Dec 4, 2006.

  1. llama

    llama New Member

    Hi all,

    I have Fibro. and am heading towards fitting the criteria for CFIDS (yeah for me!). Fevers, sore throat and a new type of headache over last several months is making me wonder if CFIDS is the other shoe to fall!

    I've been extremely clumsy lately, dropping everything or knocking things over as if my eye-hand coordination is awry.

    Cognitively, I've actually improved somewhat verbally and memory-wise since starting Lamictal and Klonopin, but I get totally baffled by numbers...often not able to even subtract simple numbers like in my checkbook (very small figures..lol). I have to read and reread recipes maybe ten times to get it straight about a teaspoon or tablespoon etc.

    Do these symptoms seem like a Neurology consult would be helpful? Opinions please???

    Thanks...........Jill.............
  2. 'just to be sure' also they can be sometimes, MORE knowledgeable about which anti-convulsant, if needed, is best for you, for things like nerve pain, since they often treat this, along with seizures, even (my neuro) addresses my back pain (though, does nothing about* it..asks each visit...derrrr)

    I was sent to neuro first, because, my primary care doc, actually followed the simple *mention* of believe it or not.....the SSDI doctor..who just asked out of the blue, if I had had an MRI or ct scan of my brain---don't know *what* (particular symptom, finding in exam???) prompted the comment, but, I told my PCP, and she ordered an MRI....which showed brain lesions, in the 'typical' place, (and of size & ??? shape) for "MS"

    the report said 'due to lesion location, and patients age, multiple sclerosis should be considered."

    Off to the neuro I go, for over 3 yrs observation. I'm STILL supposed to see him...but, he, along with all but 2 of my doctors, are half an hr's drive away, and I've been too sick to even see my two doctors that are 7 blocks away from my house, lately...(since about Oct..)

    I don't really see him now, anyways, but, NEED him, for management of a facial nerve condition, at least*, (called trigeminal neuralgia--the real 'kicker' after history, MRI's, tests, & clinical 'testing' in office,) that 'clenched' an MS diagnosis, by several doctors--none of them, my treating Neuro, though.

    Three neurosurgeons, though, and 2 at a 'prestigious' hospital----they're still not MS SPECIALISTS I say. And, my "ms-like" symptoms, haven't been too terrible lately, except the facial nerve pain, that's always with me, but, flares terribly in humid, wet, & cold/windy weather..

    I was suffering confusion, to the point my neuro put "hallucinations" on a form for my 2nd EEG within 3 months...he believed I was possibly having seizures, of a sort--without the loss of consciousness...but, with spaciness, confusion, loss of time, inability to listen to someone's entire sentence to me. they'd just start to talk-I'd be gone.

    I'd told him,, Even back when i was "healthy", I would drive 15 miles to work, sometimes.....and not remember one bit of the drive....and once veered nearly into the front/side of a semi- which scared me terribly, and had me freaked out,, the entire night at work..

    I've always spaced out, and been thought "a bad listener" but, it's sooo not true...I try & try, but it's like my brain shuts down 5 words in to listening to someone..

    I recently had ONE episode, of "loss of time" where I had no idea how long my dogs had been outside..it's a really scary, lousy feeling. I used to get it, in the bathrooms of anywhere, home, restaurants, doctors office..I'd just be fastening my pants---and start worrying--"how long have I been in here?????" I wouldn't know whether it'd been 2, or 20 minutes!

    I think, a lot can* be due to medications, symptoms we don't even realize* our meds can cause, because, doctors don't tell us, they aren't listed on precautions & side effects, or we fail to read them all the way down to the "rare but serious" (which, I always seem to fall into that category of 'side effects')--and let me tell you, you will never convince SOME doctors, that THAT is what is going on---even in my earliest 20's...I got treated like "oh you're just a confused, crippled, lazy, etc etc" rather than admitting* it MIGHT be the stupid drug(s) I was on.

    Then, I'd stop one...and some things would improve..my mom would notice better than I, because, sometimes, with NO feeling* different...physically...I was actually "loaded" mentally....getting confused, stuttering, scanning for words, getting half a conversation out, then having to just abort it, because I never could pick back up where I'd left off, etc.... and these would get better, when discontinuing meds.

    I have these symptoms, anyhow, with the illness...but, on things like phenergan, elavil, & several other meds, mixed...I Was OUT OF IT. Totally felt like alzheimers. It stunk.

    Anyways, back to your question, yes, I always think ppl with CFS/FM should have a neuro consult, and MRI. Some neuro's however, will blow you off, for "just cognitive issues," or "just nerve/back pain" but, they shouldn't...they should do THEIR part, in the quest to 'diagnose by elimination' and neuros can confirm, or rule out many illnesses for us, to help us cross 'that one off our list' and move on, with piece of mind.


    Take care, Laura
  3. TerryS

    TerryS Member

    My PCP sent me to a neurologist due to unexplained headaches, dizziness, etc. We did a CT scan and then an MRI. Thankfully, mine were normal! (I also had gotten mathematically challenged, as well as had a hard time with losing words and losing my place in the middle of a sentence).

    I am much better now. My Epstein Barr titers were way up at the time...I think it was kicking my behind!

    I do think you should see a neurologist. Let us know how it turns out.

    TerryS
  4. jake123

    jake123 New Member

    My TMJ dentist sent me to this particular doctor. He is very, very good. Works very hard to fine tune meds. Very professional.
  5. llama

    llama New Member

    Hi all,

    I sincerely appreciate the responses that I've received so far...sounds like I probably should follow my instincts and the advice of my kind "family" here on the board.

    I have to admit that I also have ulterior motives. I'm in the middle, so to speak, of waiting for my disability hearing and I want to shore up the documentation on me as much as possible. The neurologist that I plan to see is very well liked and respected in the Fibro community in my area. I'm hoping he'll know what SSDI people want to hear.

    I've been to a number of docs (rheumatologist, sleep disorder, psychologist and of course primary care) but I've never really felt like they "got it!" They all seemed rather reluctant to commit to saying that any or all of my symptoms were Fibro. related. It's like the proverbial "elephant" in the room that no one wants to acknowledge...if we pretend it's not there we won't have to deal with the problem.

    As most of us have experienced, it gets lonely and disheartening to not have our suffering validated.

    Thanks again, and Terrys I will keep you posted on what happens on this next adventure........Jill.........
  6. llama

    llama New Member

  7. AllWXRider

    AllWXRider New Member

    I did the M.D.-> gastrointernologist, neurologist (4 MRIs)No problems found, cardiologist ->Cardio (electrical specialist) route and got a shoulder shrug.

    It was when I went to a D.O. that we started investigating viruses that can cause chronic fatigue. I have Epstein-Barr virus and Cytomegalo Virus. But also Coxsackie and HHV-6 can cause this...FYI. I was put on targeted Transfer Factors.

    Epstein-BArr can eventually cause scarring in the brain. Multiple Scerlosis = many scars. Thankfully, I don't have any scarring.