Any one with lots of neurologic symptoms?

Discussion in 'Fibromyalgia Main Forum' started by judithmahw, Jan 2, 2007.

  1. judithmahw

    judithmahw New Member

    I am not yet diagnosed and have my first appointment with a neurologist @ DUMC this week. Just wondering how many of you have continual neurological symptoms with their pain. Thanks.
  2. monicaz49

    monicaz49 New Member

    my pain is like an achyness...and also weakness
    As far as neurological stuff...i have dizzyness, balance problems, vision problems, numbness, weakness, especially in left side, pressure in my head, sometimes i have inner tremors and fatigue.
    But...i also have a ton of other symptoms.
    Mine are physical, emotional and cognitive.

    My neurologist examed me, suspected that something wasnt quite right yet my MRI came back fine....all i have left is a lyme diagnosis.
  3. Michelle_NZ

    Michelle_NZ New Member

    Hi, I have had many neurological symptoms this year

    - numbness - this was the first sympmtom to emergfe
    - buzzing sensations in my legs or other parts- not painful
    - burning skin - very painful
    - neural headaches - the worst pain I've ever had
    - weakness in my arms, unable to type or use cutlery properly sometimes
    - extreme sensitivity to noise

    The end result was diagnosis of CPS - Chronic Pain Syndrome, along with the CFS diagnosis. All my pain is worse at night - this is common with neuralgic pain.

    The neuralgic pain has been dreadful, but I am getting some relief

    Neurontin took the pain from a 9 or 10 out 10 down to about a 6 most days, sometimes it creeps up to a 7 and infrequently an 8.

    Again, all worse at night. When I get up in the morning, its about a 3 or 4, then late afternoon it starts getting worse.

    The other drug to help has been Klonopin -this helps with the burning skin - it has reduced it quite abit during the day, but evenings are still not good.

    I tried Epilim, but it didnt seem to make any difference.

    I'm not sure what your exact symptoms are, but I hope you find some releif

    Take care
  4. judithmahw

    judithmahw New Member

    It's reassuring to hear some one has neuro sx and it's not MS but when I read some of these messages Im not so sure having fibro or CFS isn't as disabling. Are you working? I am a nurse and an older mother of 2 school age children.
    I only work half time because of the kids but even the half time has become hard. The last few weekends I left in tears my legs and feet hurt so bad. I cant believe some thing could come on so quickly. Do you know how you got lyme disease? Was it from a Tic bite? What is the prognosis? Will you get better? Thanks for responding
  5. judithmahw

    judithmahw New Member

    How long have you been in such pain? Did the MDs ever isolate a trigger for your symptoms? Like a past viral exposure? Are you diagnosed with FM/CFS? Was MS ever suspected? Outside of a few episode of vibrations down the back of my neck which I dismissed as being some local pinched nerve. Then suddenly while an oncologist was evaluating me because of abdominal lymphadenopathy a whole slew of neuro symptoms broke out, a wide variety and very intense. This went on for 2 to 2 1/2 weeks and ever since I have had muscle weakness, vibrations, hot patches, burning toes etc. My hot patches are not painful like yours though. Thanks for responding. Have a good evening. Judy
    [This Message was Edited on 01/02/2007]
  6. Michelle_NZ

    Michelle_NZ New Member

    Hi Judy

    I was diagnosed with CFS in Feb 2004. It was after a viral infection in Nov 03.. I was really sick for about 5 months, but i went into about a 90% remission and was back at work for about 15 months until I started going downhill again. I stopped work in March 05, but the pain and neurological symptoms did not start until April 05.

    They came on suddenly - over about a 3 week period - patches of numbness, mainly in my left side - face and arms, then legs. Then intermittent buzzing sensations in my bones.

    then the numbness started turning into pain ... it was unlike any other pain I had experienced - unbelievalbe headaches that felt like they were on the inside and outside of my head - they were so painful and hot that I would be having to use ice packs each night on my head to get any relief - normal painkillers did nothing. Most nights I was on my bed crying and praying for a better day tomrorow.

    After about a month of this I finally got referred to the pain clinic and have slowly made progress since then.

    I saw 2 neurologists and had an MRI to rule out MS. My MRI came back "normal". I asked for a copy of the report but have yet to see it.

    I've also had times of extreme weakness in my limbs - my arms felt like they had no blood in them, then at night fingertips would pulse. My legs ached and were usually numb from the knee down. Sometimes I could hardly type or even feed myself. I started dropping things.

    All of these symptoms were worse at night. I would get up at about 9 or 10am and I had about one hour which was bearable and then it would all begin again.

    I am very grateful that I am not going through this amount of pain anymore. I am back to driving my car short distances and can handle visits and do a few things for myself.

    Looking back I have made a lot of progress... there is still a long way to go, but most of my days are bearable now, as opposed to completely unbearable. Many times I did not know how would make it to the end of the day.

    I hope this info helps and that you get some answers and relief.

    Take care

  7. judithmahw

    judithmahw New Member

    Im glad you are feeling better. It's kind of scary thinking all this buzzing and vibration I am feeling could turn into pain.
  8. twitcher

    twitcher New Member

    I'm very much like Michelle. I have the numbness, burning, twitching weakness, pain all day every day for the past 17 months. My arms are weak and sometimes it's hard to brush my hair. I was/?am convinced it's MS. However, 4 neurologists including an MS specialist say MS is very unlikely since I've had all normal MS tests....spinal tap, 2 mri's of the brain, 2 mri's of the cervical spine, thoracic and lumbar mri's, somatosensory and visual evoked potentials, emg. This illness has ruined my life. I want answers. No one has tested me for viral exposures etc....I'm very upset with the medical system. I go from Dr. to Dr. with no answers. They tell me it's not MS and that it's nothing serious but they don't look for other causes. I personally think it is quite serious. I saw a well-known fibro specialist who said I do have classic fibro. 14/18 tender points. He did say that he doesn't know if it's being caused by some disease process though. I was disappointed. I thought he would look further into viral causes etc....He ordered no testing. So here I am again waiting for the next appointment. I know what you are going through. By the way, I'm an RN too. I work part-time as well. There's no way I could work full-time anymore. Also, I did have possible lyme back in the early 90's with a neuro syndrome similar to this which lasted 5 years. It was not adequately treated. My lyme tests have come back negative so who knows.

  9. judithmahw

    judithmahw New Member

    My appointment at Duke is this am. Yikes. I am a little anxious after reading your post. (but glad to have the information about your expirience there). Sounds horrible. I'll post how I make out.
  10. judithmahw

    judithmahw New Member

    As a nurse you must be as shocked as I am that no one has doen any viral testing.
  11. twitcher

    twitcher New Member

    Good luck at your appt. Yes, I am shocked at the lack of medical response to my problems.

    I agree with Joyfully, not about Duke because I have never been there but about The Cleveland Clinic and other large, well-known teaching hospitals.

    I saw a neuro there a year ago. He told me I had fibro, not MS and referred me to a rheumy. The neuro never checked me for the tender points.

    I saw the rheumy. He also said I have fibro but again, never checked me for the tender points. He was more concerned about me being depressed. Of course I'm depressed this "disease" has ruined my life and still no answers.

    I finally went back there to see an MS specialist (there's no other MS center around here so I really had no choice). The doctor was nice to me and very thorough but said he was more concerned about my poor coping with this illness and referred me to a psychologist. I didn't go as I am quite certain this isn't a mental disorder and I feel that if I go then it's admitting that it is mental. So anyway, he felt I had "CFS, FIBRO and a "mood disorder". I will never, ever go back there again. This is a real, physical illness. I have heard many other people describe similar stories with the large teaching facilities.

    I've had better luck with local physicians.


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