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In Limbo... and my symptoms are freakin me out!!

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    In Limbo... and my symptoms are freakin me out!!

    Hi! I'm new here! My general practitioner referred me to a neurologist about a year ago with a laundry list of symptoms- memory and cognitive issues, tingling, numbness, and fatigue. My initial MRI showed several non-specific white matter lesions, which were not in a typical "MS pattern" but only being 34 years old, my neuro said I was 25-30 years too young for these to be normal. From there, I had a LP, revealing 3 o-bands, which he said was one short of the diagnosis requirement.

    I've gone through a million other tests, ruling out everything from peripheral neuropathy to SLE, so he wanted me to return for another round of MRI's in six months, which is now only a week away. Over the last few months, I've really tried not to focus too much on what seem like new symptoms- a tremor in my left arm when I straighten it or reach for things, tripping over my own feet or up the stairs, horrendous snoring / gasping in my sleep that is disturbing my poor husband, but the night before last I had something happen that totally freaked me out and I am just curious if anyone else has experienced this? I woke up in the middle of the night with my right arm totally dead from the shoulder down, which is a regular occurrence for me, so I used my left arm to pushed myself up and roll over, but when I made it to my back, my right hand started flailing around on its own- kind of like it was possessed- I grabbed it and held it still with my left until it finally stopped, but it was disturbing to say the least! Has anyone else had this happen?? As much as no one wants to hear that they have MS, I feel like clearly SOMETHING is very wrong and I just want to know what this is.

    #2
    Hi Mia219,

    One thing that caught my attention;
    horrendous snoring / gasping in my sleep
    I would suggest getting a Sleep Study. Sleep disorders, such as Sleep Apnea can cause fatigue and memory/cognitive problems. Many people snore and do not have Sleep Apnea but snoring and gasping for breath in your sleep is a red flag.

    I woke up in the middle of the night with my right arm totally dead from the shoulder down, which is a regular occurrence for me, so I used my left arm to pushed myself up and roll over, but when I made it to my back, my right hand started flailing around on its own- kind of like it was possessed- I grabbed it and held it still with my left until it finally stopped
    Off hand, not something I have experienced nor heard of for MS.

    When your arm falls asleep can you move it around and get feeling back?
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      Hi Snoopy!
      Thanks so much for your reply- I can't feel or move my arms at all when I wake up like that. I have to physically move it with my other hand and eventually the feeling comes back. I should also note, the neurologist prescribed Gabapentin to help me sleep and to help with the pins and needles during the day. However, I try not to take it before bed anymore because I don't snore nearly as often without it- and then at least my husband can sleep.

      Comment


        #4
        Originally posted by Mia219 View Post
        horrendous snoring / gasping in my sleep that is disturbing my poor husband
        Like Snoopy said, you should look into a sleep study. I had this problem and I was diagnosed with severe central (not obstructive) sleep apnea in my 20s, which means the brain is not sending signals to breathe during my sleep. I've used an APAP machine to sleep at night for well over a decade now. One of the (many) causes can be neurological disease.


        As far as your arm going dead - that's something I experience every now and then. Note that I have NOT been diagnosed with MS and I know perfectly healthy people without MS that have the same issue at night; the reported "cause" from these people ranges from compressed nerve to temporarily pinched off blood supply due to sleep position. I've never heard of anybody losing an arm or having permanent functional loss from it.


        There have even been nights where BOTH my arms are totally dead as in I can't move them at all they just flail around. It is absolutely frightening, so I know how you feel. Just as with you, the feeling returns to my arm/arms over several minutes of moving around or sitting up (with help lol). I would say if the condition is chronic - it doesn't go away and your arms stays numb - then I would be concerned and push more urgently for some answers from your neurologist.

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          #5
          Thank you so much!!

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            #6
            Originally posted by Mia219 View Post
            Hi Snoopy!
            I can't feel or move my arms at all when I wake up like that. I have to physically move it with my other hand and eventually the feeling comes back.
            When your arm/hand falls asleep at night the most common cause is sleeping wrong. It can take a little bit for that numb arm/hand to regain feeling, this appears to be what happens to you. While that limb is numb you have no control over it.

            I have had what you are describing but it's not due to my MS. I can have a hand/arm go numb in the night and am able to move it around for a short amount of time and feeling as well as movement returns to normal. I simply slept wrong.

            Numbness in MS will not resolve by moving the effected body part. Numbness may resolve at some point or it can be a permanent symptom.

            Even if you don't snore are you still gasping for breath? If so, I would still suggest a Sleep Study or at least mention it to your Primary Care Physician.

            Have you had blood work to rule in/out other possible causes for symptoms? A Neurologist will usually order 10 to 12 vials of blood to test for other conditions. Best wishes on your upcoming MRIs
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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              #7
              Thanks Snoopy!

              Yes, I've been tested for just about everything under the sun between my primary care, rheumatologist and neurologist. My neuro believes I do have something neurological going on, just not sure exactly what. Thankfully the permanent numbness I have is restricted to small areas on my hands, feet and back.

              Comment


                #8
                Hi Mia,

                You mentioned memory and cognitive issues. If there is no explanation, such as sleep apnea, depression, medications, I would bring up possible neuropsychological testing. It would identify deficits, possible contributing causes, opportunities to improve or compensate for deficits via occupational therapy and really important, a benchmark score for later if needed.

                As for the arm, I have permanent numbness, pain, and tingling in my right arm/hand. If I sleep in an odd positions, I sometimes can't move it. Once the arm returns to normal, I can. Non-MS related.

                Regarding the spasms, I experience this and it is related to MS. I have spasticity, which is MS related. Many people feel it like their muscles are really tight and wind up with some hyper reflexes. I take a medicine caused Baclofen, which usually keeps it in check. Once in a while, I will have problems, usually after overdoing it.

                Good luck with your testing. Try to take it a day at a time.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Originally posted by Mia219 View Post
                  My initial MRI showed several non-specific white matter lesions... but only being 34 years old, my neuro said I was 25-30 years too young... 3 o-bands, which he said was one short of the diagnosis requirements
                  Is it just me or did reading this break your heart Isn't this a recipe of the classic symptoms of MS? Lesions + o-bands + all of the other symptoms... why do you have to wait for 1 more o-band to appear rather than try to prevent another from forming by trying one of the MS meds? People treat their cars better than this... when there's a rattling noise in the engine you take it to get fixed, not wait until it gets worse. Why are they making you wait until it gets worse? That's taking a huge chance, the next "attack", the one that will cause another o-band, may do more damage than if you had been on an MS med when it happened.

                  This is absolutely crazy, it's no wonder your head is spinning. MS doesn't discriminate by age... it's an "all ages" disease. I can't offer any advice as I'm in Canada but can you switch doctors?

                  Please keep us updated, I'm so sorry to be so blunt but that's just the way I see it. All the best, take care of yourself as best as you can.

                  Jen
                  RRMS 2005, Copaxone since 2007
                  "I hope to be the person my dog thinks I am."

                  Comment


                    #10
                    Mia219-

                    Your testing sounds similar to mine! I had a lesion on my T-spine, visible by MRI, but only had three O-bands and my initial neuro insinuated the same thing-- that it wasn't enough to diagnose. However, when my brain MRI showed several lesions (both active and inactive), that made the diagnosis. All this happened since January 23 of this year. I ended up traveling to Cleveland Clinic to get a second opinion and recently began treatment on a DMT (Ocrevus).

                    Have you had both brain and spine MRIs?

                    Hang in there and be persistent. I knew something wasn't right with my body and refused to let a doctor ignore my symptoms. Please do the same.
                    DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                    "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                    - 2 Corinthians 4:16

                    Comment


                      #11
                      Smalltowngirl and Cat Mom,
                      Thank you SO very much for your responses! My previous MRI was on both my brain and spine, but I believe the one they have me scheduled for on Friday is just on my head. Depending on how things turn out this time around, I may HAVE to find another neurologist. The one I've been seeing only treats people with MS, so if I don't have any further evidence of that, I would imagine he will pass me along to someone else.

                      I'm sorry to hear that you're having similar symptoms- I hope now that they've diagnosed you, they're able to get you on the road to feeling better!!

                      Thank you both for your support- I'll let you know how this goes!

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