For those with MS and Fibro....questions

Discussion in 'Fibromyalgia Main Forum' started by sdmay3, Jan 16, 2006.

  1. sdmay3

    sdmay3 New Member

    I have been on this roller coaster for almost 4 years now. I have the fibro diagnosis. My Mri's show a few lesions that seem to come and go. (one of them is on the corpus callusum). My very first MRI done in 2002 (I think) said diagnosis was either MS or Lyme. I went through all the testing for Lyme and that was ruled out. Neuro however says not MS.

    Symptoms are worsening. Right now I am experiencing odd things such as burning pains in my muscles and muscle twitching. Even when I am completely at rest my leg and arm feel like I am stretching the muscles. My eyelid and SCALP are twitching. My arm and leg are weak. All of this is on my right side ONLY. My other side is fine. My memory loss is a lot worse than usual. Along with all this I have tingling in my hands and feet on both sides and my left lower leg.

    I don't know if this is just my fibro acting up or if I need to call the neuro back. How do you know when it is your fibro or when it is your MS acting Up?

    Thanks,
    Dawn
  2. hopeful4

    hopeful4 New Member

    Hi Dawn,
    This is not the kind of roller coaster ride that's much fun!

    I have some thoughts on this for you. The good news is that the neuro says it's not MS. Whew!

    Re: the Lyme Disease...what doctor told you it was not lyme? The neuro? Is the doctor who told you it was not lyme a LLMD (Lyme Literate Medical Doctor)? What test did you have?

    Most testing for Lyme Disease is highly questionable. The most reliable testing is called Igenex Western Blot. Also, a test called Bowen is considered a good one. Other tests are pretty worthless.

    A negative Lyme test, however, does NOT rule out Lyme Disease. Lyme Disease is a CLINICAL diagnosis, taking into account the lab test, but also your history, symptoms, and whole picture.

    I am not a Dr., but many of the symptoms you mention are consistent with Lyme Disease. If it were me, I would read up on Lyme Disease if you have not already. There's a lot of info at lymenet dot org.

    Also, many on this website have talked about Lyme, and you could do a search on this forum.

    Then, I would find a doctor very knowledgeable about Lyme Disease in your area, make an appointment, and get evaluated and re-tested with one of the more reliable tests. You can find a LLMD doctor through lymenet dot org.

    I've been sick since 2000, DX w/CFIDS/FM. Only this year did I find out it's Lyme Disease. I was tested twice by Quest, and came up totally negative. Then my Dr. ordered the Igenex Western Blot...positive for Lyme.

    There's hope...don't give up!!

    Wishing you the very best,
    Hopeful4
  3. darude

    darude New Member

    Is your son able to walk ok or does he need assistance! I just wondered because if the pain left his legs did walking improve or not? Just curious because both my legs have awful burning and numbess.

    Annie the Londoner
  4. I was Diagnosed with FMS in Oct 2001, & MS in May 04,

    I also have CFS, dx'd January 02, but, my advice would be not to fixate on any* one disease, including Lyme, I am concerned about how much lyme disease is now fixated upon on fibro and MS boards, because it has been overlooked so much NOW it seems to be pushed too much, I fear....but, my advice to you would be journal journal journal!!! your symptoms like mad. but don't go on and on with 'feelings' about them, just be very matter of fact, and "medical" like

    for your primary care doctor, they tend to shut us out when we put our feelings into things, when our information we take with us accidently (pain & lack of sleep tends to make us ramble at times, or the need to make doctors understand our he**! -- the need to put emphasis into things,)

    a pain journal for your primary doctor of what is going on for this is very important, to help you get a good treatment medication for it, and accurate test(s)/diagnosis, neurontin as the above post mentioned is something they do use for burning and tingling sensations, and also many many other anti-convulsant medications, there are many newer ones out on the market now, Lyrica, is being called the "New Neurontin" by some.

    I am on Lyrica, and on the small dose, after over a year of suffering tremendous pain from burning feet, I had about a 35% reduction in it, and also the numbness/stinging/tingling in my hands, we just increased it to 300mg a day today, to see if we can get my Trigeminal Neuralgia to calm down, as it is much much tougher to relieve & control.

    I would just journal very specifically as in the date, time, how long it is lasting, the "pain scale" as in "it is an 8 constantly" or, pain is at an 8, lasted 5 hrs" etc, then 1-17-06, left leg, burning, tingling,' "weakness in xxxx lasted xxxxx hrs," "muscle twitching..." that will also help you since you've said you are having difficulty with your memory, I can relate to that. Lesions in the corpus callosum, depending on the size, how many, and where, can sometimes affect word retrieval, and problem solving--sometimes,.

    I'm sure you know how to journal, probably nothing new to you, but that's the best advice I can give you , and I would give it you your doctor maybe after a couple of weeks, if you can stand it that long?

    make an appt, then give the journal to your doctor, and say "that is just to give you an idea, and say it has been going on for "xx" amount of time, I just wanted to give you this to give you an idea of what is going on, I need help, I want to know what this is, and who to see about it, what is causing it?"

    Then your doctor should let you know whether or not to see the neuro again, or if any other specialist etc needs to be seen or involved in tests etc..

    Hang in there, and I do hope you get to the bottom of your symptoms, I know they are odd, frustrating, painful, annoying..

    I wish you the very best of luck with this, I can feel the frustration in your post, I was right there, and still am at times, doctors are still not sure, with ME at times, if they are going the right way.... so, they still do not know the course of treatment to use with me, and it seems like everything they use makes me sicker.

    I go in tomarrow for 10 more labs. Due to weight loss, losing blood (through a not so fun route..) nausea, vomiting over the weekend,...hair falling out, etc..

    I have been through Lyme disease treatment protocols (Samento extract, antibotics,& a whole slew of supplements that go with the samento extract..I can't remember the whole tx,)
    I've been treated for heavy metal toxicity which can also cause brain lesions(mercury,lead,(I think?) and a couple other heavy metals can break the blood/brain barrier)if i said that right, & cause lesions, like lyme & MS can. Mercury, I am positive of.

    What tests did the neurologist do for you other than MRI?

    Do you know how big or small your lesions were, and do you have a copy of the radiologists or neurologists report?

    Again, the best of luck to you, and speedy relief, most importantly, and peace of mind for you, ((((sd))))

    Take care,

    aint,




  5. darude

    darude New Member

    Where are you other lesons and how many. Just curious Just bumped a post for ya
    [This Message was Edited on 01/16/2006]

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