My symptoms... which sound like fibro?

Discussion in 'Fibromyalgia Main Forum' started by Braingonebad, Nov 2, 2005.

  1. Braingonebad

    Braingonebad New Member

    Thought I'd give a little better intro, and see what fits where. I have (as probably a lot of you do) other things that complicate this for me.

    Here's my story so far....

    Tests-
    Brain MRIs, 3, all show lesions, possible MS

    Brain MRA - vascular system okay

    EEG - normal

    bloodwork- ruled out lyme's (both tests), lupus, thyroid okay, b12 okay, hormones okay
    Factor II high but further test says high on the normal side.(This is off the top of my head)

    Mri C spine - (had an accident) reversed curve, spinal cord compression, bone spurs, DDD, osteo arthritis, slightly bulged disc at c5/6

    MRI T spine - syrinx at T5 - 8 about 3 mm wide. Dx with syringomyelia last year (Similar symptoms as the neck injury, MS and somewhat to fibro)
    Otherwise all is good there

    MRI lumbar - fine

    Lumbar puncture - normal

    EMG - ( did the left arm due to weakness and pain yesterday) almost normal

    Symptoms

    Migraines w/auras (for over 20 yrs) and daily headaches

    Neck pain and stiffness, stabbing pain

    Fatigue - all the time now, but worse in fall and winter.

    shoulders - under the blades muscles spasm and stay flexed for days, along the spine constant pain like an axe is buried there, along the top of shoulders aches,comes and goes, the joint feels too big for the sockets sometimes

    Electric shocks down legs, mid T spine, come and go

    Vertigo

    Falling not due to vertigo ar tripping, just suddenly not having any body control

    Muscle spasms hard enough to make me toss my water bottle, fork or knife

    Spasticity - especially legs, if I'm walking my calves will get hard and my walking slows, sometimes just one leg throwing my gait off


    And how about this.... I NEVER get sick. Have not gotten a cold or flu in over 10 years...Anybody else like that here?

    I know what the med sites say about fibro symptoms, but it's how they happen to you .... even the docs who see people can't say it the way you can.


    Would you tell me what they are and how they happen?

    Thanks!


  2. jbennett2

    jbennett2 New Member

    You have almost the same identical symptoms and test results as I have. I was diagnosed with FM last year, and have recently been diagnosed with Lyme.

    You may want to check with your doc about where the Lyme test was sent - there are only 2 or 3 reliable labs that test for lyme. The standard one that they usually get first always shows up negative. You need a Western Blot done by a good lab.
  3. karatelady52

    karatelady52 New Member

    I agree with jbennett2 that you need to be sure your lyme test is done with Igenex or Bowen and its a Western Blot and not Elisa. Even if it is negative, try again later, they can come back positive!

    A lot of MS symptoms are actually lyme also. Lyme can mimic MS, Lupus, ALS, FM, CFS and others. Check out Lymenet dot com. You'll read about people with a lot of the same symptoms you have.

    Sandy

  4. dgail

    dgail New Member

    Well we both know each other's sx so I am not going to list mine. get the book what dr's don't want you to know about fibro---plus there are several other good ones.

    I also have several sites and one has a list a mile long---

    You know how much trouble I had accepting this---but I have,

    My new dr is sending me to pain management---

    Find a good rhemy to get dx or internist
  5. Braingonebad

    Braingonebad New Member

    Thanks for yyour replies!

    Boy, it's taking me a while to get the hang of this forum...

    I finally figured out how to find out where to veiw my own threads, LOL!
  6. jaltair

    jaltair New Member

    Most likely, your problems are unrelated to having fibromyalgia. Many with FMS go through extensive lab tests and workups with negative results. That's why it's so discouraging. If there were a problem to deal with medically, there would be more hope.

    You have so many medical problems, and I am sorry for that. No one should have to go through the severity of pain that you must have.

    The symptoms that you wrote about could be a result of the syringomyelia. You have a cyst that is causing many problems as it interfers with nerve transmission. Since the spinal cord connects the brain to the nerves in the extremities, damage by the cyst may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. This could cause the problems that you have with the headaches, neck pain and stiffnes and the stabbing pain. You also have a reversed curve, bone spurs, osteo, in the cervical spine area which could also account for the shoulder pain, and spasms. Please continue to be followed and evaluted for the syringomyelia.

    The fatigue could be symptomatic of a lot of things, including MS; could also just be fatigue from the pain that you have.

    Electric shocks down legs is due to some neurological involvement from spinal problems or perhaps MS.

    Many of the symptoms such as the fatigue, falling due to lack of body control, severe muscle spasms, spasticity, vertigo, and fatigue that you described go along with MS and lesions on the brain. Please continue to be followed and evaluated for the MS.

    I would encourage following up with the neurologist as he has recommended; in addition, I would recommend seeing a rheumatologist with all of your medical records and tests, etc. in hand. Neurologists are infamous for not "believing" in FMS/CFS. The rheumatologist will do an exam that may rule out FMS; however, on the other hand, you may have FMS. FMS can co-exist with other medical problems.

    Warm wishes and prayers your way, Jeannette
  7. Braingonebad

    Braingonebad New Member

    Thanks so much Janette!

    That is exactly what I thought....that I don't likely have fibro, and the neuro is calling it that just to *lable* me with something. Ms is such a bear to dx, so frustrating. You have to have X abnormal tests, X amount of flares...

    So they doc gets tired of my complaining and *gives* me something.

    Reading here, I just don't feel like fibro fits. You all have a lot of pain and so do I, but it's different. It comes on differently, it calms down differently...even the meds that many of you take are not what I take, or what would work for me.

    Ms doen't fit like a glove (and all the other issues make this really complicated - they ll have similar symptoms) but it seems a lot closer..

    Thanks again!

    <Do I owe a co-pay?> :)
  8. bubblesgirl

    bubblesgirl New Member

    Hi Brain,

    Sorry to read that your are having health problems,lets hope some of your pain is relieved by the correct medication.

    From the way you describe your symptoms and related problems it seems that you need to continue seeking medical advice, rather than settle for a dignosis of Fibro.
    I have worked with people who have had brain lesions and the associated jerking movements and falling. Some went on to develop MS. Some were helped when the lesions either disappeared or responded to medical treatment.

    I would stress not to worry yourself until the medical profession can give you a proper diagnosis, MS comes in many forms and for many people they live perfectly ordinary lives without ever developing MS to the point of becoming totally disabled by it.

    Good luck

    Sandy (bubblesgirl)
  9. HeidiBeth

    HeidiBeth New Member

    Did you get tested for CMV or Epstin Bar? if not try that because it is your best bet and my prayers are with you it is a nasty disease If you need anyone to talk to Im here!!
    Thanks
  10. Braingonebad

    Braingonebad New Member

    No EP - what does CM stand for?
  11. Braingonebad

    Braingonebad New Member

    Thanks for the info...

    I'd have to go through my reports to be sure. but I gather the Eliza that I had is also supposed to pick up cmv, under certain cirvumstanses. Only the lab would know, I guess, if those circumstanses were met. But I had that test 2x, both normal.

    All I see cmv doing is making one feel perpetually ill, which I have never experienced. I mean I got all the stuff little kids got in my day and age - chicken pox, mumps, the flu etc, but i'd run a fever and miss a few das of school, then bounce right back.

    And now, I have not been sick in over 10 years - no colds, no flu, no pink eye (and my kids used to get me with that all the time, LOL!) and no ear, nose or throat stuff...

    My immune system is so cranked up, you'd think I must have the world's best eating habits - no way. No vitamins either. I have no clue why I'm like this.

    I have a lot of pain, but it's spasticity, burning, shocks, migraines, and deep bone pain, as if my socket or bone(whichever is acting up at the time) is going to burst. It moves around, so I have to think there can't be anything actually wrong with that part, just the nerves controlling it.

    But it's never an all-over ache,or a sick feeling. Even when I have the wildest vertigo I am not sick.

    Sorry to whine so much - I'm just trying to make sense of things that don't make much sense! LOL!
  12. dgail

    dgail New Member

    a lot of you sx sound like mine

    I only have two small lesion on MRI

    spinal cord compression

    muscle spasm at shoulder blade (have had this for 25 years

    Osteo ar arthritis-=== Osteo;\pina

    migraines-----

    Vertigo

    deep bone pain in my legs at time, starp stabbing pains also in legs and arms at times.

    Pain from my hips down--from burning to ache to stabing

    Pain from around my rib cage around my back and left side
    had gallbladder out in 02 thinking this was the problem--however gallbladder was dieased.

    Legs going out from under me several times (one stupid neuro said this was from depression) Gee I didn't know deprssion could cause walking problems

    Also depression major for 25+ years

    buzzing in right foot

    hyperflexive in legs sitting down and hit my knee I could kick a foot ball to the end line (or where ever it goes

    congnetive problems---

    All blood work normal---When I started seeing this internist I don't think he left anything out. At first when my TSH count came back 0 he thought thyroid problems said they could cause all my problems---seecond test fine

    Another complete MRI--still same small lesion, compressed spinal cord (one neuro told me I was born with it)
    some bulging disk in several places but not causing my problems.

    I am accepting this dx until something else show---at least I am getting tx for it. and dr are not telling me it is all in my head or that I am making myself sick (like one neuro suggested) It is good to finely be heard.