hi all question..about your ideas...about my symptoms.??

Discussion in 'Fibromyalgia Main Forum' started by sabimax, Dec 17, 2005.

  1. sabimax

    sabimax New Member

    hey all, I one thread I added this..but havent heard any reply...

    so wanted to do own post...

    Ok so I have numbness and tingling of face, and body parts, pins and needles painful hurting, heat sensations on sides of head at times, blurred vision in right eye...on bad days..off and on for 2 years, vertigo, balance issues, and uncoordination of hands...as in drop things...as hands will go opposite of what mind says to...

    ok so ..seen a MS specalist who read my MRIs..and said NO not MS not neurological...then he said it is fibromyalgia.....ok no checking pressure points on me..or asking about my pains...he said that even these other symptoms can be fibromyalgia....so I feel it can be fibro..as I ache each morning...but also wonder if all these other things truely are all related to fibro.?????

    help what do you think??? sarah thanks
  2. karatelady52

    karatelady52 New Member

    A lot of your symptoms sound like neurological lyme disease. When we've had lyme for a long time it can become chronic and, depending where it sets itself up in the body, symptoms can vary. Lyme can mimic MS, Lupus, FM, CFS, and other autoimmune diseases.

    If you do a search on the FFC's (Fibromyalgia and Fatigue Centers) you will hear a lot of testimonies of those finding after extensive blood work either viruses or bacteria as the root cause of their problems.

    What I thought was CFS/FM was actually a positive lyme test and 3 viruses that are active probably because of the lyme.

    Dalphia on this board has a lot of your symptoms and is now being treated for lyme plus viruses.

  3. karatelady52

    karatelady52 New Member

    Check out the post called--- Fibromyalgia or Lyme Disease, that is the question--- its very informative.

    [This Message was Edited on 12/17/2005]
  4. Dalphia

    Dalphia New Member

    I was dianogesed with CFS/Fibro. around 14 years ago. Little did I know that what I was dealing with was in fact Lyme disease. Because, this wasn't treated accordingly, I now I have 4 coinfections to battle as a rsult of Lyme.

    When Lyme Disease is let go without proper treatemt it can and will literally over power the immune sytem causing many systemic problems, nuerological, arthrritic, etc.

    What I've learned from all this is I'll never trust the word of a Rheumatologist who hands me a pamplet and tells me to go home, live with the symptons that it will not kill or cripple me. Of course, they aren't educated on Lyme or tick borne diseases, therefore, it is much easier for them to put a label on something they really do not understand, then send the patinet on their way. Needless to say, I never went back to this fellow.

    However, it does catch up with one's body after many years of non treatment and the patient is left to suffer.

    In my opinion, just reading your symptons, if I were you, I wouldn't stop until I was tested for Lyme Disease and any coinfectons that might be underlying as a result of same.

    Hopefully, you are close to one of the FFC across the country. Or perhaps, you can find a highly respected LLMD (Lime Literate Medical Doctor) who specializes in the treatment of Lyme, (just as a precautionary measure)

    This is in no way intended to alarm you, just some good advise from someone with your same symptons.

    Best of luck to you and may you have a good ending to your problems. Dalphia
  5. sabimax

    sabimax New Member

    thanks next idea....please...cause I was tested for lyme disease few years back...twice once 6 years ago when sx started and then about 3 years ago with new dr...never had a tick but also got tested for lyme just in case...thanks though....next idea hehehe....I feel this is Neurological...the MS specialist said it doesnt fit the pattern of MS..and isnt even neurological..hmmmmm he was my second opinion..ahhhhhhh and he said fibro..but I just dont feel that it is only fibro..I feel I may have fibro..as I have sx of that..but some of these sx I jsut dont think are related to the fibro...thanks all...any more ideas welcome...ty sarah
  6. karatelady52

    karatelady52 New Member

    Most lyme tests that doctors do aren't worth their salt. You were probably given the Elisa which has a high percentage of false negatives.

    The test to take is the Western Blot by Igenex. Lyme is also a clinical diagnosis and not just the test because testing is so dependent on what stage of lyme you are in, etc.

    OK, that's all I'll say about it.

  7. sabimax

    sabimax New Member

    can you have lyme without any tick experience...?? just wondered cause that too makes me think it isnt that for me...only cause never had a tick even attached ...thanks for all the info though....you all are great ...sarah
  8. Dalphia

    Dalphia New Member

    As I recall, I've never had a tick bite either. I was never shocked as when I say my lab results which confirmed Babesisa (from a tick bite); this was the description on the results. Then from there, I knew if I had Babesisa, then it must be from Lyme. So, that is when we decided to order the "Wesern Blot" Lyme test by Ingenex Lab.

    Yes, you do have symptons of Fibromyalgia, however, from the neurological problems you're explaining it does sound more complicated than Fibro. symptons. And, you do sound positive yourself that it may be something more than Fibro.

    I wish you the best considering you seem positive there is something else wrong other than Fibro. This is a very unsettling feeling and will only enhance your symptons because our mind set plays havoc on our symptons. Please find you another doctor who will listen to your complaints.
    Perhaps, a Neurologist isn't the right doctor for what you need if you've been cleared of MS............just an idea to help you...............Dalphia

  9. karatelady52

    karatelady52 New Member

    I never had a rash either. A tick can be the size of these periods..... so many don't ever see them.

    If you want to really study lyme, go over to lymenet dot org and post your symptoms like you did here. You'll find many who have very similar symptoms to yours.

    If you're able to, get to an FFC. They treat the whole body because most of us who were diagnosed with FM/CFS have viruses and/or lyme which completely suppress the immune system.

    You can do a search on here under FFC and see their protocol.

  10. Lolalee

    Lolalee New Member

    I don't blame you for questioning your diagnosis of FMS. Your doctor should have done the pressure point test and asked about your pain and ability to sleep. It could be FMS, but most FMS patients have painful pressure points. I have heard from various sources that unfortunately many doctors will tell patients that they have FMS when the doctor does not know what the patient truly has. That is why it is sometimes referred to as a "wastebasket" diagnosis. These doctors don't realize how much damage they are doing to both their patients and the patients who truly have FMS. I had someone tell me the other day that a friend of hers was diagnosed with FMS and was cured. I asked her how long her friend had been ill. She said about a month. That's a bit unusual, I think. The "cure" was steroid injections. All this is to say, that unless you truly have faith in your doctor, which it sounds like you are questioning his/her diagnosis, you might consider seeking a physician who specializes in FMS/CFIDS.

    Good luck to you
  11. Jenni-2

    Jenni-2 New Member

    Do you drink diet sodas? If so, Aspartame poisoning can mimick MS symptoms. My sister in law has MS and her Dr. said aspartame can cause most of the symptoms you are experiencing. Alot of people are misdiagnosed with ms when it is really aspartame poisoning. Aspartame is nothing but toxins! I have completely stopped drinking anything containing it. I know it sounds kind of crazy but look it up online the, dangers of aspartame. Just a thought, I really hope you get to the bottom of this!
  12. sabimax

    sabimax New Member

    I will see a opthomologist...about my blurred vision soon...my pcp to find what she got for results with the neuro..and ask about seeing a rheumy to second opininon the Fibro....also ask again about lyme...and what test I had ....

    jenni nope read about that diet soda thing too....yuck never liked the taste so always have drank regular pepsi if anything....water is my main drink ..thanks though..

    you are all helpful thanks...living in michigan..yep could be a tick I didnt see...just thought I wuold have felt sick flu like at some point in life...and havent...but as I said I will ask which test I had for lyme...take care all, sarah
  13. bigdogrescue

    bigdogrescue New Member

    I am so glad I read this post...I'm sitting here with my mouth hanging open. My symptoms have been exactly like you described. I had FIVE different neurologist stare at me and say, "are you SURE they didn't tell you that you had a brain tumor show up on your MRI?" That was nice. Then they would always say it sounded just like MS. But according to the MRI it was not MS. I was just DX last Tues. with FMS. But my symptoms can be pretty differnt from the one's I've seen listed. The butter fingers, very bad vision in my left eye and BIG floaters (I was examined by two opthamologists who said I have 20/20 vision), I have the vertigo pretty often and even wrecked my car bc of an episode. I also have petit mal seizures, severe tremors, slurred speech...see I haven't seen a lot of those sx listed in the FMS stuff I've read. I am calling my dr in the am to tell her I want to be tested for Lyme dx.
  14. sabimax

    sabimax New Member

    wow huh....no fun to have all these sx and no dx..or a dx that we are unsure of..take care and good luck..sarah
  15. karatelady52

    karatelady52 New Member

    Make sure you ask for Western Blot and have it sent to Igenex lab.

    When you get your results, docs don't always know how to interpret them, post them on lymenet and then you'll know if you have lyme disease.