Neurological symptoms but all tests normal FM?

Discussion in 'Fibromyalgia Main Forum' started by Chrisgirl, Aug 15, 2008.

  1. Chrisgirl

    Chrisgirl New Member

    Hello all. I am new to this forum and have found what I have read helpful.

    Back in March, I started feeling exhausted and had joint pain. Then I lost appetite and was nauseated. My PCP said it was stress (my husband got a job in another state and we knew we'd be moving in June. I've been in the same city since birth - 38 years) My husband was going to start the job a month and a half before my children and I could move because of school, so I was a bit stressed. Eventually I went to a rheumatologist who ruled out RA and Lups. He sent me to a neurologist who ordered a brain MRI which came back negative. By this time, I was having no more joint pain, but tingling all over my body, even tongue, lips, and nose. Also muscle twitching and concentration problems and still the fatigue. After the normal MRI, the nuerologist said FM and put me on Gabupentin.

    Then we moved and I starated having blurry vision in the afternoon and evenings. Went to a neurologist in our new state and he did lots of blood work, an MRI of the c-spine, and an antibody test for a rare and horrible disease called Devic's. Also a VEP and SED test and nerve conductor and EMG, all of which thankfully have come back fine. When I asked about FM, he said it wasn't acting like FM, but doesn't know what it is.

    I am now having severe muscle pain in legs, arms, back, and my muscles shake sometimes like when going down steps or bringing my arms down from a raised position. Sometimes feel like I am leaning to one side when I walk, but I am not. Still have blurry vision and lots of floaters. Was feeling very sad and anxious about the move and health problems, but I am handling it emotionally now with God's help. I just want to feel better and want to know what this is. Anyone had similar symptoms?
    [This Message was Edited on 08/15/2008]
  2. monicaz49

    monicaz49 New Member

    Just a quick reply for you

    I cant answer your question about everything being FM related buuuuuuuuuuut....

    I have CFS with overlapping FM and....
    I have experienced nearly everything you have mentioned and then some either in the past or currently. My worst year was the first 2 or so. You seem to be at an early stage. Perhaps things will improve with time at least a bit.

    Like you, all tests were fine.

    One piece of advice i can give you is as hard as it is the less scared you are of your symptoms and more you allow them to be....the less additional symptoms you will bring on to yourself.

    Positive wishes of improved health to you. Try to stay as positive as you can and you will gain sooo much informational and emotional support you are off to a good start.

  3. homesheba

    homesheba New Member

    same here...
    one thing about this crazy stuff..
    it like has a million- gazillion other wierd things
    that happens with it
    im finding out....
    this is the strangest illness,
    or whatever to call it
    that i have ever had ,
    and / or read about...
  4. Chrisgirl

    Chrisgirl New Member

    Thanks Monica. Very good advice. I do believe there is a connection between how we feel emotionally and physcially. I'm so glad I found this site.
  5. bunnyfluff

    bunnyfluff Member

    About 40 people on this board that were previously Dx'd with FMS/CFS have found out they had Lyme (this year).

    Your symptoms strongly point to that.

    You can google it, but here is some info to help you:

    Lyme Symptoms:

    General info/symptoms of Lyme:

    Lyme Disease ( commonly misspelled as Lime or Lymes ) symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite. <<< IMPORTANT <<<

    Lyme Disease, SYMPTOMS & CHARACTERISTICS, a compilation of peer-reviewed literature reports

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscreet areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses.

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit.

    Lyme is epidemic in Canada/US period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )
    Symptoms of Lyme Disease
    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased effect from alcohol and possible worse hangover

    If this describes you, or someone you know, PLEASE,PLEASE get the proper testing for Lyme (currently the most accurate is Igenex ~ 2008). Post your results, or take them to a LLMD (lyme-literate Dr.). There are many places to get treatment, and advice.

    My best to all,

  6. Chrisgirl

    Chrisgirl New Member

    Thank you Bunny. I asked my neuo about being tested and he wasn't very responsive other than saying I didn't live in an area that has tics with this disease. I just moved to TN from VA, so I don't know. I will definitely push for this next time I go. Thanks so much for the great info. I had no idea.

  7. Janalynn

    Janalynn New Member

    Hi there,
    So first doc did say FM, then you moved and other Doc says no, but he doesn't know much about it? I'd visit another Dr. Tell them you've been diagnosed and ask what he/she knows about it. That's a start.
    I get the very same muscle twitching - right down to when I walk down the stairs and raise/lower my arms.

    Are you in a lot of pain - Find someone who can help you so you don't suffer any longer!
  8. CanBrit

    CanBrit Member

    I'm guessing that the negative MRI means that MS is not a possibility? A lot of what you're describing points to FM. I have many of the same things...tingling, muscle pain, poor memory, fatigue, sometimes twitching.

    I also was sent to a specialist who diagnosed me with severe dry eyes. It my case, it was pain and redness that were the symptoms. Sometimes I get a bit blurry. They eye problems can be caused by an autoimmune condition called sjogrens syndrome. Here's a quick run down of the symptoms.

    Sjogren's syndrome
    An inflammatory autoimmune disorder characterized by a dry mouth and dry eyes. Additional eye symptoms include burning, discharge, foreign body sensation, itching and light sensitivity.

    We have so many odd symptoms that I think it can even overwhelm Dr's!

    Please keep us posted on what they eventually settle on as a conditions(s).


  9. cbs1234

    cbs1234 New Member


    Did you take a round of levaquin, cipro, avelox or another fluoroquinilone antibiotic around the time or just before you started having these symptoms?

    Sounds exactly like the symptoms I had from taking levaquin 7 years ago.
  10. Chrisgirl

    Chrisgirl New Member

    Funny you should ask. Just the other day I came across a site that had info. about Cipro and the damage it has done to people.

    My symptoms matched theirs exactly except (thankfully) for multiple tendon ruptures. I knew I had taken Cipro, but wasn't sure when. Did some calling and found out I took it in Jan. 2007. Do you know if the effects can be a year later? It sounded like from what I read that most of the people began to have symptoms while taking it or shortly thereafter.

    Are you still having the same problems?

  11. Gumbo

    Gumbo New Member

    I just read your reply to the Chrisgirl. Wow, does that information that you posted sound like me. I just had the Lyme test at last Dr. visit & it was negative.

    What do I do now? Could it have been a false negative? Is the test that you mentioned more accurate?



  12. Chrisgirl

    Chrisgirl New Member

    Thanks for your reply. Yes, I think the normal MRI means no MS. That is what the neuro. here in TN said as well as the one in VA I only got to see once. On my last visit to the neuro. in TN he said I could have a mild case of MS, but we'd have to see what the latest test showed (VEP,SED). They were normal. I cannot imagine what is mild about the symptoms I'm having.

    He did mention Sjogren's, but my SED rate was normal and so he ruled it out. A friend of mine said it could come back normal and you could still have it. Does this sound right to you? I need to ask him when I go again.

    I'll keep you posted.

  13. boscosmom

    boscosmom New Member

    all your symptoms ditto to me...mmine started that way 3.5 years ago...
    i am now being treated by a lyme literate md...just started so i will let you know how it goes.
    prayers, sc
  14. Chrisgirl

    Chrisgirl New Member

    Thanks for responding. Good to know I am not alone, though I wish none of us had to deal with these symptoms.

    Please let me know how it goes for you. I go to my PCP for some blood work in the am and I am going to ask him about the Lyme tests as well as my neurologist.
  15. cbs1234

    cbs1234 New Member

    There are many, many people that end up with delayed onset of symptoms. In the medical literature, there are cases of tendon rupture occurring up to a year after taking one of these drugs.

    Go to\quinolones to chat with others that have experienced delayed onset of symptoms.

    By the way, I didn't have a tendon rupture either, but tendons all over my body were damaged.

    Seven years later, all of the neurological symptoms are gone, but I still have some tendon issues, although not nearly as bad as in the beginning.

    I would almost guarantee that your symptoms are related to the adverse effects from the cipro. Unfortunately, there is no cure other than to let your body heal over time. Do avoid ANY meat products potentially contaminated with a fluoroquinilone including fish, shrimp, etc. Farmers (including fish farmers) feed this stuff to the animals to keep them healthy so they grow bigger and faster. Gets into the tissues and can cause more symptoms for you. I eat only organic beef.

    Good luck and be careful with the Lyme--although a real disease, it is a fad diagnosis. Do some research on your own and you will find that Lyme is way, way over diagnosed and becoming more so everyday by so called LLMD's. When you hear that there is only one lab in the whole world that can accurately test for lyme (Igenex), you should know that something fishy is afoot.

    There is a clear cause and effect here between you taking an antibiotic known to cause these problems. If you don't see a clear cause for lyme, don't let someone falsely diagnose you. You may end up on long term ABX (risky) for a disease you don't have.
    [This Message was Edited on 08/18/2008]
  16. boscosmom

    boscosmom New Member

    i was one of those with very NEUROLOGICAL symptoms...that kept asking al the fms people if they had this symptoms and that.
    i have seen many prestigious clinics: mayo and barrow.
    i have had every test they make for neurology to include biopsies.
    and now they find a positive IFA antibody to borrellia and some WB bands.
    after 3.5 years of HECK!

    Chris i am also chris (but, i'm a gal too)....christine in full...ha.
    anyway, i had every single one of your symptoms in that order...

    i am from north la. and ark area...where i did my research as a field biologist...i never remeber a rash or even a bite but, lots of ticks crawling on me and i remember joking...saying, "good thing we are in the south and they don't carry lyme"....
    well, words come back to bite us...literally.

    many prayers, sc
  17. cbs1234

    cbs1234 New Member

    Your lyme data comes from a fringe group of docs that are way outside the mainstream. There are no peer reviewed articles (in reputable medical sources outside of so called LLMD circles) giving any credence to Igenex and its one of a kind, only reliable test for lyme. Again, anytime you have any company claiming a corner on the market on a very profitable test, you should be very, very skeptical.

    Lyme is real, but it is way, way overdiagnosed. You are thousands of times more likely to be hurt by a drug you are taking than you are to contract lyme. Lyme fad physicians blame almost every known clinical symptom known to mankind on lyme.
  18. victoria

    victoria New Member

    I agree with Bunny and Jam. And btw, IGenex for the western blot is fully qualified/approved by the FDA and paid for by insurance. As far as the myriad symptoms, well, there are!! -- just as there is with syphilis, which was called the 'great masquerader' for good reason. Syphilis is a spirochete as is Lyme; Lyme just happens to have a more complex genome!

    My son by 17 had all your symptoms but all blood tests were 'normal'... yet his pulse had gone down to 46-8, BP was low, he was utterly fatigued sleeping 16 hours/day, couldn't go to school, migrating aches in joints/muscles, lost weight, couldn't remember things, had 'floaters' obscuring his vision at times, and more.

    His internist didn't know what to even suggest (at least he was honest). By that point, due to my own response to a protocol that produced herxes (have never officially been tested myself), I decided it was likely Lyme, supposedly very rare in Georgia. (It's not!)

    Well, he was CDC positive 2X within 6 months. Can't get more + than that. He suffered with a lot of neurocognitive symptoms for at least 2 years prior with atypical responses to psychotropics, then started experiencing all the physical symptoms.

    Please, I do NOT want to offend anyone, but I swear if he'd been female, he'd have been dx'd with FM and put on painkillers, steroids, etc. and basically dismissed as his tests for any viruses were also negative.

    And, as I said, he'd already had atypical responses with any psychotropics tried, and no surprise as he had lyme; subsequent clinical dx is that he also at least has bartonella and babesia.

    These can all cross the blood-brain barrier. Co-infections btw, are more the rule than the exception, and you may have 1 or more of them without Lyme even. And, unfortunately, testing reliability for them is even worse than for Lyme.

    Virginia AND Tenn. are rife with lyme... it has become endemic. The sad thing is that the screening test that the CDC recommends is even less reliable than the Western Blot done by IGenex, the most reliable lab as they specialize in Lyme tests, and even the IGenex WB is 70% reliable at best.

    LabCorp and Quest are less reliable; Canada's national lab won't even release their reliability rates, citing 'national security reasons' (?!?). If you look at CDC maps of Lyme, you'll notice a distinct border between US and Canada, amazing security they have up there!

    I hope you go someplace like lymenet where you can get personal referrals to an LLMD (lyme literate MD) as I did; it saved us a LOT of $$ and lost time as I would've been trying doctors in the Atlanta area, who knew nothing at the time other than the bare minimum treatment for acute lyme.

    Instead we went out of state, his doc sees people not only from all the US states but from overseas as well... different strains are in different areas. And many never see a rash, btw; my son never did.

    Also, if you go to the lyme board here
    I have a post with a lot of good resources, plus there are a lot of good posts overall about it all....

    Please explore this avenue, so many here on this board as well as others have found they have one or more tick born disease. It's no surprise the CDC says that 95% of vector born (caused by insects) diseases are transmitted by ticks...

    yet Lyme and its co-infections are called 'fads' while WNV/West Nile Virus gets all the press, and it represents something like 2% of the entire category of 'vector born' diseases.

    good luck, hope you find a good doc who takes you seriously and treats you based on a clinical dx and not blood test results, as the CDC says a doctor SHOULD do...

    all the best,

    [This Message was Edited on 08/19/2008]
  19. CanBrit

    CanBrit Member

    Yes...your sed rate can be normal and still have sjogrens. Our illnesses wax and wane with the tide and sometimes I think that for a test to be positive, you have to take the blood/xray/mri/scan at the right second!!

    My eyes seem to flare like my FM does. That being said it's nowhere near the pain and discomfort of FM.

    All the best,

  20. bdancer

    bdancer New Member


    I tried to go to the link you provided:

    I got an error - something about the page has moved or expired?

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