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  • Advice, please - an MS attack?

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    Old 06-16-2010, 07:23 PM   #1
    juliesand
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    Advice, please - an MS attack?

    Hi,
    Like others, I've been reading this board for awhile, still undiagnosed--

    For 6 months, I have had neck pain and numb 4th/5th fingers on left hand. An MRI showed bulging C5-6 disc and left nerve impingement. I tried traction and a nerve root block - no success. An EMG was normal.

    2 months ago, I developed a sudden burning in the back of my neck, then legs that went rigid whenever I walked. I also kept having falling sensations, like my feet would go through the floor, and developed neuropathy in my hands/feet.

    A week after the attack started I had MRIs of brain, cervical, thoracic and lumbar. All normal, no lesions. The bulging disc still showed, along with some narrowing of Cspine.

    I've seen neurologists who have no idea what this attack has been.
    A couple of weeks ago, I had a lumbar puncture. They told me I threw them a curveball - the CSF had 7 oligoclonal bands, the blood serum 3, for a differential of 4. What is confusing is that the report, done by Mayo Lab, is called "Multiple Sclerosis Profile" and reads, "this is a positive result."

    Yet the drs will not diagnose me, because they did not see lesions back in April.

    2 days ago my legs suddenly improved - out of nowhere, after two months of going rigid. I no longer need a cane to walk. But now, I am having an almost constant headache at the base of left side of my skull, and blinking lights/white ring around my left eye.

    Does anyone think this sounds like MS? Could you advise me what to do next?
    Thank you!
    Julie S.

     
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    Old 06-16-2010, 07:48 PM   #2
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    Re: Advice, please - an MS attack?

    Hi. MS symptoms can indeed seemingly disappear overnight as well as appear overnight. You might want to have a follow up MRI in September or October because scars may appear by then. Did you have a VEP (visual evoked potential).

    In answer to your question, yes, I believe you could have MS. Have you been seen by neurologists who deal with MS? I asked this because you noted they could not explain your situation.
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    Old 06-17-2010, 04:28 PM   #3
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    Re: Advice, please - an MS attack?

    Ill also add that I too, have C spine damage. I have a herniated disc at C3-C4 and C5! Ive had complete numbness in my left hand and fingers for almost 6 years now. It hurts all the time. Numbness is a dumb word, isnt it? Its not numb. I can feel the tingling and burning always. Heat and humidity make it worse. Ive also had EMGs, tons of MRIs and yes, I do have over 50 lesions which gave me a positive MS dx when this first came on. HoWEVER, no one can tell me if the pain I have in my neck and shoulders is MS related or spine related. Ive had several trigger point and epidural pain blocks in my neck- none of which have done a darned thing.

    As for the spinal tap. Positive for MS isnt an option. Positive for a MS profile is probable. What the difference is is that Spinal Taps cannot prove MS, however they can rule out everything that presents like MS and also show Obands. By the way, more then 75% of patients who have a positive MS dx, do not have OBands, all they mean is that autoimmune disease is present. THey mean nothing in the grand scheme of things. They are used to rule out brain infections, PML, meningitis, etc- so, the fact that you have Obands proves you have a autoimmune disease, there are hundreds of those to choose from- and it does show that you probably ruled out the infections.....is it MS? Like Jayhawk said, you would want to repeat those MRIs to see if anything shows up. You might also want to read up on the McDonald criteria, to see what it is exactly that doctors need to dx MS.
    I hope you get your answers soon. Feel better!
    Nikki
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    Old 06-18-2010, 07:40 AM   #4
    Snoopy61
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    Re: Advice, please - an MS attack?

    Hello juliesand.

    Could it be MS...possibly.

    In my opinion: Many neuro's base a diagnosis of MS on the MRI rather than looking at the whole picture. Even if you had lesions there are other diseases/disorders that cause lesions.

    I am someone who did recieve a diagnosis of MS with a positive Lumbar Puncture and no lesions. Mine was a clinical diagnosis. To this day MS is still a clinincal diagnosis, there is no single test, by it's self, that can confirm MS. However, the longer you go without lesions the less likely it's MS.

    Your symptoms COULD be MS, however, whenever there is nerve impringment from bulging discs this can also cause neurological symptoms like the ones you are experiencing.

    You MAY be dealing with MS but you MAY also be dealing with symptoms caused by nerve impringment. You are in a very difficult situation and I hope you find a doctor who can sort this out for you.

    Best wishes

     
    Old 06-20-2010, 03:16 PM   #5
    juliesand
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    Re: Advice, please - an MS attack?

    Thank you all so much for your comments.
    It's weird that I've gone from seeing doctors who minimized my symptoms (the neuro this winter said "I've seen worse MRIs" and that the disc was only "tickling" the nerve; the ER dr said "well, you walked across the room, didn't you?") to drs acting worried after they saw the spinal tap (2 wrote to Mayo Clinic asking them to see me).

    I have not had the VEP. They did draw blood for some paraneoplastic tests (looking for rare cancers). Yet, everything I read about my symptoms seems to come back to autoimmune, specifically MS. I don't get why drs wouldn't consider the most obvious first????

     
    Old 06-20-2010, 04:16 PM   #6
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    Re: Advice, please - an MS attack?

    Juliesand
    there is no "specifically for MS" when it comes to a spinal tap. A MS profile is to rule out other infections which present as MS. Thankfully, they didnt find any of them; however if they had, youd be on your way to recovery.

    I too, have seen neurosurgeons, orthopedic surgeons and have had more injections, spinal blocks and epidurals then I can mention due to buldging and herniated discs in the cervical area. Its true- they cannot cause walking problems, as they dont reach the nerves with control gait or legs; however its also true that they shouldnt be causing my hand and finger problems- but something is. Like you, I continue to seek advice and try to find answers, but after 6 years of this, Im starting to belive its all MS related and not at all related to the disc issues. I have pain constantly. Ive gone thru everything except surgery and I refuse to do so, as that terrifies me.

    I wish you well honey. I truly understand your pain and your frustration.
    Nikki
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    Old 06-21-2010, 09:11 AM   #7
    juliesand
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    Angry Re: Advice, please - an MS attack?

    Thanks Nikki-
    I'm going to ask for a referral to a neuro who specializes in MS> we have an MS center at the clinic I go to. The drs I've seen have all been young, in their 30s (don't mean to sound ageist; just saying), and to tell the truth, I don't think they know what the hell they are doing. The first one said, tell me the truth, now: how much do you drink? I told her I didn't drink at all, and she looked stunned. Then she asked my husband and I if there was any chance I had syphilis?????
    All her tests came back negative, obviously... I was never so embarrassed and mad

     
    Old 06-21-2010, 12:39 PM   #8
    MSNik
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    Re: Advice, please - an MS attack?

    Sounds like its time to do exactly that Juliesands. Im sorry you are having such a rough time. I know what its like. Well, sort of. For me, the MS dx was easily gotten, however the pain and the constant burning, tingling= no one has ever been able to address that.

    I also went to a MS specialist in the beginning. Know what? I spend my entire day with doctors professionally, and I hate specialists in general. They give you 5 minutes, bill you 500$ and assume you understood what they said. I found a wonderful regular NEuro, who is close to me, in my insurance network and actually has bed side manner. He also happens to have a large stable of MS patients on everything from Copaxone to Tysabri....so I feel comfortable with him.

    However, even he, cant find me an answer to my hand/finger issues. SO I keep searching.
    Keep us posted, ok??
    Feel well.
    Nikki
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    Old 06-22-2010, 02:51 AM   #9
    JodiH
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    Re: Advice, please - an MS attack?

    Interesting... I had no idea they could diagnosis ms w/clinical episode(s) only. I thought MRI had to show lesions....

     
    Old 06-22-2010, 09:26 PM   #10
    juliesand
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    Re: Advice, please - an MS attack?

    Hi,
    I had a really strange/scary thing happen today. I've had the burning/tingling in my hands/feet for 2 months, along with other symptoms. Today we took our granddaughter to a small lake (really a manmade pool) with sand beach and small pebbles. I was walking with her, and suddenly had the sense that I was walking on sharp rocks that were cutting my feet. I got really agitated - every step felt excruciating. I yelled to my husband, then limped out of the water. All i could think was that my feet were full of cuts. I also felt burning with every step, like i can imagine walking on coals would feel. When I sat down, I looked at my feet - they were FINE - no cuts or burns, not even redness. Then I looked out at the pool - it was actually fine sand and tiny pebbles, not a rock in sight.
    Has anyone had this??????
    Thanks
    Julie S.

     
    Old 06-22-2010, 09:48 PM   #11
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    Re: Advice, please - an MS attack?

    I go through cycles where I do not like to be touched or to touch certain things. The burning sensation first happened to me when I opened a galvanized gate. The pain was searing. The burning sensation so far has been limited to galvanized steel. But plastic bags or even paper can bugger my hands.

    I have not had the burning feet problem as you have described, but I have not been to a sandy beach in "forever". Swimming in the river or lake, I always wear swim shoes. So far, no problems. Maybe you can wear some aqua shoes because they might help.
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    Old 06-23-2010, 06:30 PM   #12
    MSNik
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    Re: Advice, please - an MS attack?

    Juliesand,
    You might also have some neuropathy going on. It can affect any of your limbs, including your feet. If you have had an attack on nerves which reach your feet, even the smallest thing could feel mamouth! I know that when my MS is bad, and Im feeling especially worn out and exhausted I cant stand to have my husband touch my hands. Which stinks, because holding hands has always been important to me. Even sitting on the couch, Ill reach for his hand, but at times instantly let it go- like its on fire.

    I can imagine what you went thru- Ive been there in a different way. Talk to a doctor about this. Fibromyalgia can affect people like you describe too. Its possible to have more then one diagnosis. He might prescribe a drug like Lyrica or Gabapentin, which will ONLY work if it is Fibro related, if its related to a zing on your brain, which affects your feet, the drug wont do anything for you. I know, Ive had every single nerve drug known prescribed for my hands, and NOTHING has worked. Im now told that its definately in my head- as in there are lesions exactly where the nerves are, which affect my hands.
    Nikki
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    Old 06-23-2010, 07:31 PM   #13
    elezah
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    Re: Advice, please - an MS attack?

    oligoclonal bands are a pretty good dx for MS. I have lots of damage to my back, diabetic, hyponatremia and went undx for 30 years until I lost control completely from the waist down and same thing a week later. Last june. This feb. another relapse and one doctor ordered a lumbar puncture and 6 oligoclonal bands showed up in fluid. I have not walked since Feb and have been in a power chair for three years. I am very angry that I was undx for so long and medication will not help me at this time. After each relapse I do not completely recover.

     
    Old 06-24-2010, 04:40 AM   #14
    MSNik
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    Re: Advice, please - an MS attack?

    O bands do NOT diagnose MS.
    What they do is point towards autoimmune diseases and give the doctor more information about what it ISNT. MS doesnt have a test to dx it; therefore its basically diagnosed on ruling out everything else.
    Nikki
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    Old 06-24-2010, 08:45 AM   #15
    juliesand
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    Re: Advice, please - an MS attack?

    Thanks, Nikki and others--
    I am officially in limbo right now. I had an attack of rigidity in legs, a "falling sensation," and what was diagnosed mild mild neuropathy (burning in hands/feet) that started in April. They did an MRI a week later , found no lesions, and pronounced that I could not have MS. The Lyme test was negative.
    I had a lumbar puncture last month - 7 Oligoclonal bands in spinal fluid, 3 in blood.
    Since last week, the rigidity in my legs has finally stopped - I no longer need a cane. I continue to feel the burning and lack of balance, though, and I have had a headache at left base of my skull and blinking white lights in my left eye.
    The drs are thinking about another MRI--
    Thanks
    Julie

     
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