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Muscle atrophy with MS? - Limbo Land :(

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    Muscle atrophy with MS? - Limbo Land :(

    Hello,
    I first want to say I am not here hoping to receive a diagnosis from anyone. I understand that only a doctor can do that with proper tests - and I am seeing doctors about this currently. I am merely here to see if anyone may have any further insights based on their own experiences.

    Some background on me and my history: I'm a 26 yo female. I'm 5'1", 105 lbs. I am fairly athletic and try to work out often, eat healthily. I'm not a smoker, don't drink, don't do drugs.

    A few years ago I developed a very slight tremor in my left hand, barely noticeable, and was also diagnosed with sleep apnea. I had another sleep study done earlier this year and was told I don't have sleep apnea anymore aside from some very mild central hypopneas, though my sleep is just as bad as before. I wake up what feels like several times an hour, and also have to pee sometimes several times at night.

    Sometime early to mid 2016, my tremor got much worse suddenly. I've been told it is an end-action tremor. I also have mild dysdiadochoinesia, where I cannot do rapidly alternating movements with my left hand and in general it is very clumsy and uncoordinated. My MRI in Feb 2017 showed that my left cerebellum is smaller than my right. One doc said that could be causing the tremor, while all other docs assessing my situation believe it to be congenital and think my symptoms are not related.

    Around the same time I began experiencing some very severe fatigue. I am always fatigued as I don't sleep well but this became something different. It comes in seemingly completely arbitrary waves, and hits me so hard and suddenly sometimes I will suddenly feel like I'm wading through quicksand and need to lie or sit down immediately. Like a full body sensation fatigue. My legs do feel like jelly sometimes, but my gait is fine. My mind started feeling constantly foggy, like "scrambled eggs" and daily mental tasks seem sometimes impossible, from following simple instructions and conversations, to remembering simple words, to concentrating on anything.

    Same time I began experiencing some mild neuropathy. Sporadic burning sensations in my hands, sometime achy pain in my arm, electrical jolts going down my leg or neck, sharp stabs of pain in my jaw. This only happened sometimes. It seemed to disappear by early this year, came back around April, then disappeared again and has not happened at all in the last couple months. When it happens I am so sure of what I'm feeling, but then when it disappears it makes me wonder if it was all in my head or maybe stress related. I also as of 2016 started having these crazy itch attacks. I get so itchy suddenly and scratch until my skin looks sickly. It usually happens in bouts that last round 15 min, and I've noticed it generally happens after I shower or when I'm under the covers at night. My boyfriend has joked he will need to put mittens on my hands to keep me from scratching. It drives him crazy.

    I have also been having intermittent double vision for 3 months now, which my eye doc can't explain.

    Then early this year, 2017, along with my tremor I noted muscle weakness in my left arm and hand. I couldnt text with my left hand anymore, or type well, hold things with more effort, and had trouble with fine movements like buttoning my bf's shirts, picking up objects, and doing any sort of activity that requires coordination or precision.

    The couple neurologists I have seen have confirmed that I have mild muscle atrophy in my left hand. I have thenar and hypothenar atrophy, and flattening of my palm. It has been getting more evident since July. When looking at the back of my hand you can see a big dent in between my thumb and forefinger, and my hand is beginning to look very frail. I also have some mild rebound and hyperactive reflexes.

    I've undergone all sorts of blood tests, which have all come back fine. No Wilson's disease, no thyroid issues, no vitamin deficiencies, no Lyme, no myasthenia gravis. I had an EMG, which came back clean, ruling out Peripheral neuropathy and ALS. I had an MRI of my brain. No lesions or inflammation they could see of my optic nerves. Finally, had an MRI of my brachial plexus, which was clean, ruling out thoracic outlet syndrome.

    No images of my spine yet.

    Does any of this sounds like possible MS to anyone? My big question is, is neurogenic muscle atrophy possible in a condition like MS?

    My doc knows something is wrong, but just doesn't know what yet. He said seeing as the EMG came back clean, that my symptoms point to my brain, but my MRI came back mostly normal

    #2
    Originally posted by Chiclet View Post
    My big question is, is neurogenic muscle atrophy possible in a condition like MS?
    Hi Chiclet

    Yes - MS atrophy is possible when muscles don't receive the nerve impulses that they require to function due to demyelination (damage to the nerve fibers or destruction of the axons in the brain and spinal cord).

    There is also atrophy from deconditioning, which is due to a lack of using the muscle.

    I have atrophy on my right arm and hand. It was a gradual worsening, and it definitely wasn't from lack of use! It happened over the span of a few years while working for the US Postal Service at the mail processing plant.

    I'm right handed, and some jobs required good manual dexterity (keying on zip code machines, tying and hooking sacks of mail, filling out forms, etc.). Fortunately there were other jobs that didn't require as much dexterity that I was able to do at the time.

    I also have atrophy now on my right leg and foot, and my right butt too.

    Are you going to get spinal cord MRI's? Those images would be useful in ruling in or out other various conditions.

    Good luck and hope you get some answers.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Some of what you both describe could easily be carpel tunnel. Thoracic outlet syndrome is so difficult to diagnose I don't know is it can be ruled out by a simple MRI.
      I had the carpel tunnel surgery in 2000. Since then, I haven't been able to use my right arm for anything. But it was gradually getting better until June 2017 when I was preparing for a housing expexction. Now it's back to wearing the splints every night and brushing my teethe with my left hand. Is it painful? Boy is it.

      Insomnia can cause so much long term damage to the body. When you are ready to get some sleep, tell your doctor. There is so much presssure to say,"I don't take any drugs" but the kind of insomnia you are described is something you don't have to live with.

      Comment


        #4
        Originally posted by KoKo View Post
        Hi Chiclet

        Yes - MS atrophy is possible when muscles don't receive the nerve impulses that they require to function due to demyelination (damage to the nerve fibers or destruction of the axons in the brain and spinal cord).
        Hi Koko - thank you so much for your response. I really really appreciate it. I had tried responding last week but I think I must have done something wrong when trying to post it haha.

        I am so sorry to hear you are also experiencing atrophy. how long ago were you diagnosed?

        So are you saying that, regardless of use, if a limb or extremity is not receiving the proper nerve impulses from the brain/spinal cord, then atrophy can result? Mine is definitely not from lack of use, either! And yet it is gradually wasting, and is perplexing my doc.

        Would that also mean that this kind of atrophy due to lack of nerve impulses from the spinal cord would not show up on EMGs? Have you had any EMGs, and if so did they come back clean?

        I am definitely going to bring up imaging of my spine to my doc when I see him next. It seems like the logical next step.

        Comment


          #5
          Originally posted by palmtree View Post
          Some of what you both describe could easily be carpel tunnel. Thoracic outlet syndrome is so difficult to diagnose I don't know is it can be ruled out by a simple MRI.
          I had the carpel tunnel surgery in 2000. Since then, I haven't been able to use my right arm for anything. But it was gradually getting better until June 2017 when I was preparing for a housing expexction. Now it's back to wearing the splints every night and brushing my teethe with my left hand. Is it painful? Boy is it.

          Insomnia can cause so much long term damage to the body. When you are ready to get some sleep, tell your doctor. There is so much presssure to say,"I don't take any drugs" but the kind of insomnia you are described is something you don't have to live with.
          Hi palmtree, thank you very much for your reply too! I forgot to mention that one. They have already tested me for carpal tunnel, as well, and I don't have that, nor any entrapments of any other nerves in my arm. The wasting is pretty painless, save for frequent intermittent cramping I have in my left thumb muscle.

          My doc has referred me to a new sleep specialist who I'm going to see in December. The insomnia/disrupted sleep definitely sucks and doesn't help I have tried medications such as ambien and lunesta, which haven't helped to keep me asleep at all! I think I need a horse tranquilizer or something lol.

          Comment


            #6
            Originally posted by Chiclet View Post
            So are you saying that, regardless of use, if a limb or extremity is not receiving the proper nerve impulses from the brain/spinal cord, then atrophy can result?
            I'm no expert , but I would think that the degree of atrophy would depend on how impaired the nerve impulses are, and therefore how much the limb is able to be used. The atrophy I have is definitely noticeable when comparing my right side to my left side. I do passive exercises/stretches with range of motion on my right side to try and maintain some tone.

            There is technology now to help with impaired nerve signals called Functional Electrical Stimulation (FES). It uses electrical impulses to artificially generate muscle contractions and body movements. I have never tried it myself.

            Originally posted by Chiclet View Post
            Would that also mean that this kind of atrophy due to lack of nerve impulses from the spinal cord would not show up on EMGs?
            Sorry, I don't know the answer to that.

            Originally posted by Chiclet View Post
            Have you had any EMGs, and if so did they come back clean?
            I didn't need an EMG for my diagnosis because my clinical exam, brain and spinal cord MRI's, and spinal tap all confirmed the MS diagnosis. I was diagnosed with Primary Progressive MS almost 20 years ago.

            Wishing you good luck with finding answers. Keep us informed with what you find out, if you want to.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Yes, and almost everything else you've experienced!

              Hi Chiclet,

              When I began having issues, I was very healthy, active, fit, 30 (5'10", 165 lb male), runner, hiker, back-packer, climber, scuba diver, private pilot, and more. I sprained my left ankle while playing basketball and never fully recovered. As it healed, I began experiencing foot drop and tripping, could not run more than a half mile. For the next 2 years, I had seen several doctors and had many different tests and procedures to try and figure out what was wrong, left leg feeling heavy, numbness, pain in knee all gradually getting worse. Finally saw a neurologist who wanted to "rule out MS" before going any further. I already had one unsuccessful knee surgery and was recommended by an orthopedic doctor to have another surgery on my calf muscle to relieve nerve pressure there. The neurologist did a spinal tap (the only definitive test at the time) and the results came back positive for MS. My cerebral-spinal fluid had the protein (forget name/number) in it at 99x what it should have been, providing a definite diagnosis. It seems that a lot a people with MS had a traumatic event that caused it to kick in.

              Since that time, I have experienced every symptom you have mentioned including the intense/unbearable itching, which by the way very few MS people experience, except I do not have sleep apnea. The biggest difference for me is that my symptoms have been spread out over a longer period of time whereas yours all seem to be condensed. I am now 60. Although I seldom experience pain, early on for a few months, I would get a random stabbing pain in my inner ear, felt like and ice pic and made me cry; it hurt so bad. Of course doctors always have medication available, which I am never fond of, but I took carbamazepine which helped a lot but made me feel like a zombie.

              I don't do a lot of posts, not fond of all the bleeding hearts, just look for the data and facts (hypotheses). I won't bore you with other stuff and meds unless you want to know...

              ...depressing topic, so I just want to let you know that I am a very positive and happy person!

              Good luck and Happy New year!
              Scott

              Comment


                #8
                Interesting video about diagnosis and CSF

                FYI, interesting informational video from recent MS World conference.

                http://msworld.org/conference-center...sease-severity

                Comment

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