question re: muscle spasms/twitches

Discussion in 'Fibromyalgia Main Forum' started by k.king0412, Jul 20, 2009.

  1. k.king0412

    k.king0412 New Member

    does anyone else get these? mine are getting worse and I do not like this! they are all over, involuntary spasms and I also notice my balance is worse more often. it seems to have started with transitory numbness and progressed to this. anyone?


    ps: yep. same Karen King, slightly different user name. long story.
  2. Nanie46

    Nanie46 Moderator


    Yes, I also have muscle twitches and I recently discovered that the cause of my FM is the bacteria Borrelia burgdorferi (lyme) and associated coinfections.

    Here is some excellent info from a lyme expert....there is a symptom list on pages 9-11...which includes muscle twitches, being off balance and numbness....

    It is likely that the cause of many people's FM or CFS is infectious.

    Many here have later discovered that the cause of their illness is the lyme bacteria, and also commonly bartonella, babesia and ehrlichia.

    You can post questions for me anytime on the Lyme board if I can help you.

    Have you ever had a western blot IgG and IgM through Igenex lab in CA?

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  3. frickly

    frickly New Member

    Yes, I used to have this problem alot. My hands got so bad that it was difficult to type. I also had alot of numbness throughout my body. I also have an infection. Mine is a mycoplasmal bacteria called M. pneumoniae. Since being on antibiotics this symptom has disapeared. My doctor says that my particular kind of infection causes symptoms simular to MS and rheumatoid arthritis. I did have many symptoms that fit these diseases but most disapeared when I started treatment. It made me feel much better after I had an MRI to rule out MS. Have you had this done?
  4. carolannwestern

    carolannwestern New Member

    I also have this happening to me. Balance is also off. I never really connected these to FMS I will be seeing my doctor soon and I will be asking her about it.
  5. ladybugmandy

    ladybugmandy Member

    i have this too. wondering if its the beginning of MS...

    maybe magnesium deficiency?
  6. k.king0412

    k.king0412 New Member

    yes, I have had the Western Blot tests thru Igenex, I have Chronic Lyme also (and CFS, EBV, high HHV6~you know the drill). My Lyme was dormant when I left KC this spring; maybe it's not any longer. I was treated for Bartonella briefly but the Mepron made me SO sick, it wasn't worth it when it came back up!

  7. k.king0412

    k.king0412 New Member

    thank you for your post, very interesting! since I have Lyme I have been on beaucoup antibiotics. my infectious disease dr in KC says I have am a 'MS like' patient as some of the symptons are so close. but nobody has run an MRI to check. does Medicare cover those? I am on SSD and that's all I've got....we did rule out RA (yay! one thing I do NOT have!)

  8. frickly

    frickly New Member

    Sorry, I don't know if medicare pays for this but I would assume it would if a doctor said it was neccesary. Considering that you have symptoms of MS you could argue a good case for this test. My insurance did pay for the test and it was a big releif. It did take several years before a doctor even considered it for me. It's all about money. I hope you are able to at least rule this out. It was a releif for me and one less thing to worry about. I do think it is strange that your doctor says you are an MS like patient but has not bothered to rule this possibility out.
  9. zeowa

    zeowa New Member

    I also have had this symptom (spasms, not tingling, not so much balance issues) for a couple of years; interesting to see I'm not alone. I recently saw a neurologist, and told him I was concerned about MS because of this symptom (he practically laughed at this suggestion). His reaction really ticked me off (he said it was not on the spectrum of "evil, something to really worry about" symptoms) especially because I've been taking klonopin, which would cover many/most of those symptoms, so if I'm still having the problem (sometimes waking me 100+ times a night), it seems worth taking seriously. Is an MRI the true test for MS? If so, how did anyone have success getting their doc to order one?

    I had the western lyme test and was tested for the other 3 (names in a post above) and was negative. Has this been the case for anyone who ended up testing positive by igenex? I have been considering trying to get my ARNP to do the igenex test for some time... Also, since it's been 7+ years, would anything show up?

    For the poster who mentioned pneumonae (sp?/sorry--is there a way to see all posts when one replies?), how did you discover this and in what context? I have been treated for upper respiratory infections thought to be caused by this, but I assume you mean that you have had/have a more chronic form. What has been your treatment regimen?

    I've had some success with magnesium taurate (the only form I've found useful), but the symptoms have increased over the years.

    Thanks in advance for any advice!

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  10. Nanie46

    Nanie46 Moderator


    Many people with chronic lyme were initially misdiagnosed with MS.

    Many of the findings are the same...........see pages 47-50 of this great powerpoint presentation: (the entire presentation is worth reading).....,_LIA.pdf

    Igenex tests for 14 IgG bands and 14 IgM bands on their western blot. Other labs test for 10 IgG bands and only 3 IgG bands.

    Other labs leave out some very important lyme specific bands.

    Many people with lyme never officially test positive (it's only a reporting criteria, not diagnostic criteria).

    Igenex also includes 2 species of borrelia bacteria in their testing methods, not just one.

    I cannot say this enough.....Lyme is a clinical diagnosis and is never ruled out by just a negative lab test.

    I had my symptoms for 21 years and I had lyme specific bands show up (even though it was officially negative as far as reporting it to the CDC goes).

    Please read the lyme and coinfection info in this paper by a lyme expert....

    Look at the symptoms that can be attributed to the different infections pages 22-27....and in particular p. 26-27.

    A comprehensive symptom list is on pages 9-11.
  11. frickly

    frickly New Member

    M. pneumoniae is a species of mycoplasmic bacteria. It is common in people with CFS FMS, RA and GWI. There are many species but the ones most commonly found in us is M.fermentans, M. hominis, M. penetrans, M. pneumoniae. They are extremely difficult to get rid of and it has been found that only certain kinds of antibiotics are effective. They include, doxycycline, minocycline, ciprofloxacin, azithromycin and clarithromycin.

    I do beleive that this bacteria is what caused my MS symptoms, including the numbness and twitches. When I started antibiotics a number of my symptoms including widespread pain, especially in back of neck, disapeared. I beleive it is important for all of us to be tested for these bacteria but do realize this will not be everyones issue.
  12. zeowa

    zeowa New Member

    I will have to read all that you posted about lyme. I have never heard that it is a clinical diagnosis above a positive test--I'm guessing doc's do not care for that at all.

    Have you guys been seeing infectious disease specialists? I am not sure which docs handle these symptoms.

    Frickly, can you tell me anything about how the M. pneumoniae was found? I was aware of the theory of chronic mycoplasma infections in CFS, but I am not sure how yours was diagnosed (i.e. sputum sample, etc.?).

  13. andreake

    andreake New Member

    Had bad twitches in legs. I believe the medical term is fascillations (sp) I took a lot of magnesium which helped. I am now on Abilify (antidepressant) and they are gone
  14. ladybugmandy

    ladybugmandy Member

    i think i will try injectible magnesium. i did that once. compounding pharmacies make it.

    i'm sure infections other than lyme can cause twitching...can't any brain infection affect the nerves that way?

    my doctor said that demyelinization, which is what happens in MS, does not present as twitching.
  15. Nanie46

    Nanie46 Moderator


    I see a Lyme literate MD, not an ID Dr.

    ID Dr's do not believe chronic lyme exists, treat for 4 weeks max, and tell you that you are cured despite ongoing symptoms.

    Lyme literate MD's follow the ILADS
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  16. dannybex

    dannybex Member

    Heavy metal buildup (from mercury, lead, arsenic, etc.) can disrupt mineral balance like calcium/magnesium and potassium/sodium...leading to twitches, tics, and especially numbness and tingling -- plus, they can also screw up the immune system.

    Google "Andrew Cutler" and "mercury", or "heavy metals"...and you'll turn up a lot of helpful information.


  17. Doober

    Doober New Member

    Always going on somewhere of my body.

    The funny thing is that it does not always just happen after activity. I could be "Relaxing" in bed watching TV and all of a sudden my biceps are twitching and jumping around like crazy.

    There was one time that my right butt cheek was twitching while waiting at a register to pay for something. Man , I thought some little kid was smacking me fast with something and I turned around fast..... Nope no-one there.

    My wife asked me if I got stung by a bee or something the way I grab my behind and started to rub the twitches way...

    When the happen in a place you can see them like on your arm, you get amazed at how fast they are going sometime.
  18. ~jean~

    ~jean~ New Member

    I WAS having them horribly in my feet and calves. My leg would look all distorted when this would happen. I started using a magnesium drink and it helped a bit. I now take a nightly dose of magnesium initially for helping me to sleep. I have muscle spasms now but not in my legs or feet. I cannot talk to anyone about this due to where it is. :(

  19. luigi21

    luigi21 Member

    Yep i get it par for the course of having fibro im afraid, although some meds make them worse such as the old type antidepressants and gabapentin
  20. ~jean~

    ~jean~ New Member

    Have not had spasms since taking vitamin e. So the spasms are part of FM and not CFS?