new ideas from neuro (yes, i found a decent one)

Discussion in 'Fibromyalgia Main Forum' started by obrnlc, Apr 2, 2007.

  1. obrnlc

    obrnlc New Member

    hi,
    just got back from second visit with a new neuro, and she at least TALKS and LISTENS, which makes her OK in my book even if she prescribes eye of newt and hair of frog!

    some interesting things she brought up--she asked if i ever had a copper level done, and it got me thinking that i had a copper IUD in for 10 years, about when all of this started. Many of us are in the same age bracket, does anyone else have this in their background? (it was called a "paraguard" and was the first "safe one" on the market after the disastrous IUD's of the 70's)

    anyway, i am getting that checked, although i had the iud out 8 yrs ago now, but waiting to get another test also--a test for "stiff man (person) syndrome", which i have been researching since i got home, and although very rare, it does have alot of similarities as many of our symptoms.

    another idea she had was botox injected into the neck because of the severe tightness i had--anyone with this experience?

    she also mentioned some testing that checks blood levels before and after exercise, since that severe muscle weakness and fatigue is one of my main problems, but we decided i would stick with the mirapex trial for now.

    She wasn't real familiar with the mirapex trial for fibro (my pain doc can't figure out why this isn't more popular or better researched since 2005) but said since i thought it was working to go with it, even tho i just read today that it has not been studied and probably doesn't work with C-spine issues, but i will pretend i didn't see that for now.

    any thoughts on this copper issue or "stiffman syndrome"?
    have a great day--L
    [This Message was Edited on 04/02/2007]
  2. mezombie

    mezombie Member

    I get Botox injections for migraines. My neurologist also injects Botox into my neck muscles because their tightness contributes to the migraines. It really helps!

    He also treats people with myofascial pain with Botox.
  3. Didoe

    Didoe New Member

    We are not a guinea pigs.

    Sometimes I read thru our threads and you know we're all scrambling so hard for relief and explanations. Our pain opens the door for so many issues when as vulnerable patients needing relief we consent to any treatment protocal, proven or not.

    At least be fully informed about Botox, side effects and contraindications before accepting treatment with it.

  4. mezombie

    mezombie Member

    Botox is approved by the Food and Drug Administration (FDA) for treatment of blepharospasm (eyelid spasm), strabismus (crossed eyes)and cervical dystonia (painful neck spasms).

  5. mezombie

    mezombie Member

    Options For Intrusive Neck Spasms
    Oct. 16, 2005
    DEAR MAYO CLINIC:
    I have had cervical dystonia for nearly five years. It occurs primarily when I lie down. I was given several injections of Botox, though it worked only the first time, and several other drugs were also ineffective. Do you have any suggestions for treatment? -- Santa Rosa, Calif.

    ANSWER:
    Cervical dystonia, also called torticollis, is a condition in which neck muscles involuntarily contract and cause the head to turn, twist or tilt to one side, sometimes repetitively, typically resulting in abnormal and often painful postures.

    Though the problem can be caused by underlying diseases, for most patients CD has no known cause. While the precise area of the brain involved in CD is unknown, it is thought to come from a malfunction of the basal ganglia, a part of the brain involved in movement. Brain scans, however, are normal.

    Oral medications may be used to reverse the muscle spasms and uncomfortable neck postures, but they tend to be only mildly helpful at best. Muscle relaxants theoretically should be effective, but they, too, either fail altogether or result in only modest improvement.

    The most effective treatment is injection of botulinum toxin (Botox) directly into the affected muscles. Botulinum toxin weakens the muscles for two to three months, reducing the spasms. To sustain this effect, the injections must be repeated. The procedure has few side effects.

    Botulinum-toxin injections are very helpful for most people with CD, but they sometimes fail. In some cases, the patient develops antibodies to the botulinum protein, which block the drug's effectiveness. In such cases, a different strain can be tried: Two strains (botulinum toxin-A and botulinum toxin-B) have been approved by the U.S. Food and Drug Administration (FDA). Perhaps the resistance you soon showed to the first type of Botox could be overcome with the alternative form.

    In some people, the muscle contractions of CD only occur in certain positions or with certain activities. In your case, the CD apparently is linked to lying down, which must impair your ability to sleep. Discuss with your doctor whether a sleep aid or pain reliever would be helpful to override the discomfort and allow you to get some rest.

    For people with very troublesome CD that fails to respond to botulinum toxin and other medications, surgery may be appropriate. A procedure called selective denervation involves cutting the nerves to the neck muscles that are in spasm. The rationale is similar to that of botulinum-toxin injections: trading spasm for muscle weakness. Only a few neurosurgeons in the United States perform this surgery. But in the right hands, it can be very effective.

    A different surgery, deep-brain stimulation, involves a pacemaker-like device that is implanted in basal-ganglia brain regions. This option has recently been tried in a few people with CD, but because it still requires further study, we cannot currently recommend it for treatment of CD.

    -- J. Eric Ahlskog, M.D., Neurology, Mayo Clinic, Rochester, Minn.
  6. Didoe

    Didoe New Member


    Lots of meds are "approved" by the FDA and then recalled by the FDA after enough people get sick, see lawyers and start making noise. I think one of the latest is Zelnorm?

    Now the FDA is trying to force young girls to get vaccinated against HPV because no one can keep their pants on--there are major side effects to the vaccine, even mentioned in the ads. In a decade when these girls start wondering why they're having trouble getting pregnant or somethings wrong god forbid with their babies, we're hear the vaccine is being withdrawn.

    FDA pushes to market drugs that companies invested and now want to make $$$$$$$$$$$$$$ on and the paper work of safety too often done on patients, sometimes overseas where evaluations are different than in U.S. rather than years in the research labs because its too expensive. If you feel the tradoff is worthit for you, great.

    But everyone should know what they'e sticking into their bodies so they dont moan later how they got cheated and scammed by drug companies.
  7. happycanuk

    happycanuk New Member

    My daughter have Stiffman Syndrome. She had Graves Disease, had a drink of radiation, and then got Stiffman Syndrome. She had a terrible time bending any of her joints. After she started taking Synthroid the Stiffman Syndrome disappeared.
  8. obrnlc

    obrnlc New Member

    hi,
    thanks to all for botox info and SFS info!

    I actually was joking about "eye of newt", meaning i so appreciated a decent doc i would overlook such things, it really was a joke, not a "cut"(foggy moment) against new ideas--i was really hoping for some botox info and truly appreciate it.
    Thanks again--L
  9. TrishinSpokane

    TrishinSpokane New Member

    yes, I had a Copper-7 IUD back in the late 70's. Had many problems with it, so after about 6 months had it removed. Maybe you are on to something about the Copper. Will have to bring this up to my MD as well. Thanks for the post.

    Trish
  10. LuvQuilting

    LuvQuilting New Member

    into my throat muscles for muscle tension dysphonia caused by the FM. They took the pain completely away. Only problem is that they last about 2-3 months and then you have to have another treatment. My treatments cost around $1,000 each time because I usually had around 4 injections into the muscles that surround the vocal cords. Neurontin has made it so I no longer need the injections. I'm sure they would help your neck muscles if your insurance covers them.
  11. mujuer

    mujuer New Member

    I loved your post. I got the joke. Your dr. sounds like good people and is a keeper. Good on ya'. Keep us posted on your results and keep your sense of humor. P
  12. obrnlc

    obrnlc New Member

    thanks for all the responses! Zombie--very interesting info on the BOTOX.
    by the way, I asked this new neuro her thoughts on cfs and fibro, and if thats what she thought the problem was, and she rolled her eyes. I asked "don't you believe in it?" and she said"oh i believe in it, I just HATE it because there is no rhyme or reason to it all and we can't figure it out!"
    sounds like us!
    have a great day--L
  13. mezombie

    mezombie Member

    That's pretty much my neuro's response when I mention CFS! I think it's great you found a doctor who will listen to you, take your symptoms seriously, and try her best to figure out what's wrong with you or at least help you feel better.

    My neuro is great and has gone far beyond his speciality with me. He has come up with new ideas and tested me for things no one else has. I've made more progress under his care over the past five years than I have with all my previous doctors combined.

    And the only reason I went to him was because I heard he was good with migraines and was at least familiar with CFS because he treats a lot of FM patients! I think I may be his only CFS patient.

    It sounds like you found a "good one". Hang on to her.
    [This Message was Edited on 04/03/2007]