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    MS hands/arms only

    Hi,

    I’m new to this site but thought I would give it a try to see if anybody out there has a similar case. I have had numbness/tingling and burning sensations in both hands and sometimes forearms for almost 5 years.
    within the last year I was diagnosed with MS based on spinal tap and 3 lesions (2 c-spine, 1 brain). Symptoms are 24/7 but more of a nuisance than pain. I’ve been the route of many that included carpal tunnel, EMG,
    NCV, bloodwork and assorted MRI’s etc. the specialist recently diagnosed me with a mild late onset relapsing MS and has now changed It to progressive.
    My symptoms seem stabilized for now so medications (MS protocol) would be too aggressive. Meds for the symptoms do very little (tried Lyrica, gabapentin)

    I was very active and an avid tennis player which I have given up because of the lack of touch and feel with the racket. I can still golf and have not lost the strength in my hands or arms, just feelings. My specialist says I am an odd case.

    Are there any oddballs out there like me that can tell me their story And let me know where it all ends. Most everybody I have talked with have leg issues which I do not have. I’m looking for hands/arm only similarities.

    thanks for taking the time to read my story and I hope someone out there can relate to “tinglehands”.

    #2
    Hi Tinglehands and welcome to MSWorld

    Most everybody I have talked with have leg issues which I do not have.
    Cervical Spinal Cord lesions can cause symptoms from the those lesions down. It's most common to have C-spine lesions cause mobility problems as you have noticed from those you have spoken to.

    I have spinal cord lesions and yes my legs are most effected.

    MS affects us all differently, I would not consider your situation as being odd, it's just how this disease is affecting you

    My symptoms seem stabilized for now so medications (MS protocol) would be too aggressive. Meds for the symptoms do very little (tried Lyrica, gabapentin)
    Although some say those medications can help with numbness and tingling I have never found that to be the case for me. Usually those medications help more with nerve pain and Spasticity (muscle spasms/tightness).

    Take care.
    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

    Comment


      #3
      Tinglehands, I had a few episodes of paralysis in my right arm/hand that I recovered from. I was diagnosed with Transverse Myelitis which is a demyelinating inflammatory disease of the spinal cord. It is considered a rare disease and I can confirm that to be true based on the difficulty I experienced getting a proper dx of Transverse Myelitis. It has taken years to recover from the initial attacks with *paresthesias* as a long term symptom, until I developed Allodynia which is the next progressive stage of sx's after many years, at least in my case. Transverse Myelitis is a separate disease from MS, although they are both autoimmune diseases and cause demyelination and are both inflammatory.

      The difference between MS and Transverse Myelitis is that MS involves the central nervous system consisting of the brain, spinal cord and optic nerve. Transverse Myelitis involves only the spinal cord. Also, there are distinguishing features between MS spinal cord lesions and TM spinal cord lesions. MS spinal cord lesions tend to be lateral, versus TM lesions which cross both sides of a section of the spinal cord.

      Also, there are 2 types of Transverse Myelitis, one is an acute onset that can result in sudden paralysis from the chest down. The non-acute TM presents over days or weeks of intermittent extreme pain and paralysis in legs or arms/hands, and/or pressure with pain around the torso.

      I have always received MS treatment from MS specialist throughout the course of my MS, one MS specialist in particular for 12 years who's experience involved clinical trials for the early MS therapeutics who I consider an MS guru, who did not catch the TM. Despite the experts that have treated me over the years, it has taken a decade for me to be accurately dx'ed with transverse Myelitis. This is important because there is contradiction with standard MS treatments for those with TM.

      I hope this has been helpful and also hope your sx's are exclusively related to MS. Best of luck and let us know how your are doing.

      Comment


        #4
        Originally posted by MSW1963 View Post
        Tinglehands, I had a few episodes of paralysis in my right arm/hand that I recovered from. I was diagnosed with Transverse Myelitis which is a demyelinating inflammatory disease of the spinal cord. It is considered a rare disease and I can confirm that to be true based on the difficulty I experienced getting a proper dx of Transverse Myelitis. It has taken years to recover from the initial attacks with *paresthesias* as a long term symptom, until I developed Allodynia which is the next progressive stage of sx's after many years, at least in my case. Transverse Myelitis is a separate disease from MS, although they are both autoimmune diseases and cause demyelination and are both inflammatory.

        The difference between MS and Transverse Myelitis is that MS involves the central nervous system consisting of the brain, spinal cord and optic nerve. Transverse Myelitis involves only the spinal cord. Also, there are distinguishing features between MS spinal cord lesions and TM spinal cord lesions. MS spinal cord lesions tend to be lateral, versus TM lesions which cross both sides of a section of the spinal cord.

        Also, there are 2 types of Transverse Myelitis, one is an acute onset that can result in sudden paralysis from the chest down. The non-acute TM presents over days or weeks of intermittent extreme pain and paralysis in legs or arms/hands, and/or pressure with pain around the torso.

        I have always received MS treatment from MS specialist throughout the course of my MS, one MS specialist in particular for 12 years who's experience involved clinical trials for the early MS therapeutics who I consider an MS guru, who did not catch the TM. Despite the experts that have treated me over the years, it has taken a decade for me to be accurately dx'ed with transverse Myelitis. This is important because there is contradiction with standard MS treatments for those with TM.

        I hope this has been helpful and also hope your sx's are exclusively related to MS. Best of luck and let us know how your are doing.
        thanks for your info. My current specialist was referred to me from another neurologist that specialized In autoimmune diseases. I was referred because he thought that a specialist in TM would be more appropriate. The TM specialist diagnosed me with the late onset MS and not TM even though I can relate to many of the symptoms you mentioned. My symptoms developed slowly over time and could not be tied to a specific event in my life.

        Comment


          #5
          I can relate

          Hi Tinglehands.

          Welcome to MSWorld! Tingling in my right hand is my oldest symptoms. It started 30 years ago. I did have an episode of vertigo, which seemed to affect my cognitive focus 3 years after the tingling started. Then nothing for another 13 years. I was finally diagnosed 16 years after the tingling started. I had brain lesions and numerous lesions C2-C6.

          I have no leg symptoms. I had some numbness during a relapse, but it resolved. My hand tingling has progressed to full right arm numbness, which sometimes feels like I have a fully inflated blood pressure cuff on. My other symptoms I struggled with were cognitive and fatigue. But anyone who doesn't know me, would never guess, other than think I am clumsy, as I drop things constantly with the right hand. I have been trying to learn to do more left handed.

          I did struggle some with balance a few years back, but worked with PT. They said legs were fine, just needed to work on combination of vestibular therapy tied to physical movement. It resolved.

          Everyone's path with MS is different. I wish I had been diagnosed earlier, wonder if I had started on a DMT earlier, would I have progressed? I will never know. I stabilized once I started on Tysabri.

          Stay active, eat healthy. Have you tried any PT for your hand? I do some exercises to try and maintain the dexterity I still have. Is it possible to play tennis, just at a less competitive level than you are used to? I played volleyball and missed it, but I couldn't serve or spike like I used to. So I played in a fun league for years.

          I am curious, did your neuro say MS treatment medications are too aggressive or is that your personal thought? If you don't mind me asking, when you say your diagnosis was changed to progressive, was it changed to PPMS or SPMS, or something else?

          Aside from the tingling expanding, my MS appeared to lay dormant for 13 years before another relapse. 30 years out, I am grateful to be where I am.

          Lots of luck to you.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Pennstarter reply

            I would be curious of your age since you’ve dealt with this for 30 years. Initially my doc leaned toward recurring MS but failed to consider my history of slow progression starting in the finger tips and moving into the hand and wrist. Currently it is bilateral but within the last 2 weeks I have had a strange Sensation in my right bicep and upper arm like a cramp with a bicep tear. Arm is still fully functional. My doc said it was unrelated. He has not made a distinction between PPMS and SPMS. Keep in mind that I have not lost the use of my hands. I only have the numbness/tingling and burning while maintaining full functionality. I could play tennis, but as you say, not at the competitive level I like to. I still golf twice a week and am retired at 68 years of age. The doc did say that the normal MS protocol in my case at this point would be too aggressive and possibly be more harmful than helpful. I will be getting another MRI next year to check for additional lesions.

            thanks for your input.

            Comment


              #7
              I am 2 months shy of 57. At 68, I can definitely understand not starting treatment if no signs of new disease activity.

              Late onset is different than my path. But 30 years out, I still have use of my hand and arm, the strength is still there. I do exercise both to keep the strength and flexibility, even if I can't feel it.

              I do have to be more conscious when carrying or picking up something since I don't feel it. I also can't control a ball if you ask me to throw it. So while catch with someone else is out, dogs don't seem to care where I throw!

              Lots of luck to you.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                It has been well over a year since I last posted anything to this site. I thought I would just update my status. Nothing has changed! My recent scans show no new lesions and the numbness/tingling in the hands has remained the same. One interesting tidbit was that my electric impulses were slower and more noticeable in my legs than in my hands even though I have no issues with my legs. Just one more thing for the doctors to scratch their heads about. I’m still golfing and working in the yard, but I’m afraid my tennis days are over.
                Still not taking any meds and hope to keep it that way. Next MRI scheduled for springtime.

                Comment


                  #9
                  Hi Tinglehands!

                  Originally posted by Tinglehands View Post
                  It has been well over a year since I last posted anything to this site. I thought I would just update my status. Nothing has changed! My recent scans show no new lesions and the numbness/tingling in the hands has remained the same.
                  Thanks for stopping by to check-in with your update.

                  Looks like a good report!


                  Originally posted by Tinglehands View Post
                  One interesting tidbit was that my electric impulses were slower and more noticeable in my legs than in my hands even though I have no issues with my legs.
                  Could be that your hands just have sensory involvement (numbness, tingling), as opposed to motor involvement (voluntary movements)?

                  In any case, hope you continue to enjoy golfing and yardwork.

                  And try not to go another year before posting, Tinglehands!




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

                  Comment


                    #10
                    Originally posted by Tinglehands View Post
                    It has been well over a year since I last posted anything to this site. I thought I would just update my status. Nothing has changed! My recent scans show no new lesions and the numbness/tingling in the hands has remained the same. One interesting tidbit was that my electric impulses were slower and more noticeable in my legs than in my hands even though I have no issues with my legs. Just one more thing for the doctors to scratch their heads about. I’m still golfing and working in the yard, but I’m afraid my tennis days are over.
                    Still not taking any meds and hope to keep it that way. Next MRI scheduled for springtime.
                    Thanks for the update. I'm so glad that your MS seems to be remaining stable and not progressing.I'jm glad you checked i with us.
                    ~ Faith
                    MSWorld Volunteer -- Moderator since JUN2012
                    (now a Mimibug)

                    Symptoms began in JAN02
                    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                    .

                    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                    Comment

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