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Diagnosed last Friday.

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    Diagnosed last Friday.

    I have finally been diagnosed with MS. Its been a long road from my first symptom and thinking I was out of the woods. I had a symptom just about 5 years ago. The initial thought by the neuro was it was either a tumor, infection or MS. But the lesion on the brain did not look like MS. Though the spot eventually shrunk and went inactive and my symptom cleared up I was told it was not a tumor. Infection had been ruled out previous too. I was sent to an MS specialist, but over the next few years after this symptom I was considered a victim of ADEM not MS. Over this past Christmas I had a new symptom (felt like swelling in the feet and that I was walking on bumpy ground) which cleared up over a month and was left with tingling on my lower half when looking down. Though this is not nearly as bad as it was, its still there if I pay attention to it.

    I guess in all the good news, at least for the time being, my neuro showed me a scale of those who suffer from MS and said because of the type of symptoms and the length apart from my first symptom to this most recent bout I am on the less aggressive side of MS. I am being put on Rebif which I chose over a pill form. Hopefully it will be an effective medication.

    I still have the tingling when looking down and if I overexert myself. Before this last symptom I was going to the gym 4 times a week and plan to go back now that I know it wasnt an injury that caused the new symptom. I have also been having weird tickling/semi-iching in random places that come and go. All very manageable.

    Anyone here gym rats? Anyone I can bug, or get advice from time to time when needed?

    My name is Chase. I am a full time father, family man, work full time as a software engineer for a large e-commerce site. I think its a great job to have with MS. They are very supportive of those with MS, and I can work from home if needed from time to time. Also just need to be able to keep typing and I will always have a job. Other than my family life I love to code. It is a deep passion of mine. I love building apps.

    This is just a bit about me. Thanks for listening. I am going on my first MS walk tomorrow for a local MS walk that happens every year here in Salt Lake City. Have a good night

    #2
    Hi Chase good luck with your MS journey, what you describe as tingling when looking down is whats known as Lhermitte's sign you can get it upper or lower body arms and fingers or legs and feet. I remember when I was first DX the doctors wouldn't tell me what was wrong with me until I had more than 2 episodes of MS symptoms even though the MRI results were (yes you have MS) I was told you have leisions in your brain and spinal cord , everyone with MS has them but some people have them and don't have MS, really helpful but that was 20 odd years ago, as being a gym rat Im more a lounge lizard these days good luck and welcome ask as many questions and read as much as you can about MS Craig

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      #3
      Hi Chase,

      Sorry to hear you received the diagnosis of MS.

      left with tingling on my lower half when looking down
      This is called Lhermittes sign.

      When related to MS it is caused by a lesion or lesions on the cervical spine.

      Lhermittes can cause abnormal sensations such as tingling, vibrations/buzzing and electrical shock type feelings when bending the head down. The sensations will last only seconds but can be repeated each time the head bends down.

      this is not nearly as bad as it was, its still there if I pay attention to it.
      Over time it is possible to ignore Lhermittes or not notice it. However, if you start to notice Lhermittes increasing in it's intensity pay attention to any other possible symptoms that might be appearing.

      In my case, an increase of Lhermittes would be my first indication that I was headed for an exacerbation (relapse, attack, flare-up), this is not the case for everyone with Lhermittes. Lhermittes would decrease in it's intensity as the exacerbation improved but It has never completely gone away.

      Anyone here gym rats?
      I am not a gym rat but I very strongly believe in exercise being beneficial for MS.

      Exercising with MS requires patience. An increase in your core body temperature can cause MS symptoms to temporarily increase but once you cool down your symptoms should go back to what is normal for you. Possible ways to stay cool: fans, air-conditioning, working out in the cooler part of the day and using a pool.

      After working out a cool shower is very helpful for bringing your core body temperature down quickly and decreasing any MS symptoms that became problematic due to your core temperature increasing.

      The level to which you exercised before MS may be very different than now. Take it very slow and increase very slow. It can take time to determine if you have limits due to the disease, what those limits are and how far, if at all, you can push those limits.

      I currently use and have in my home an Elliptical and a 4-station weight machine. I also use a balance pad and do exercises learned in Physical Therapy.
      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


        #4
        Originally posted by displayNone View Post
        Also just need to be able to keep typing and I will always have a job.
        Welcome to MS, Chase -- that is so untrue. Your brain is far more important. Without a properly functioning brain, you won't have a job.

        Cognitive impairments affect up to 65% of people with MS. Cognitive impairments are just as responsible for people losing their jobs/careers and going on disability as are physical impairments. If you lose your mental processing speed and ability to reason and remember, your coding days will be over. There aren't any jobs for people to just mindlessly type gibberish all day.

        Unhealthy brains are also responsible for stressing and breaking family relationships.

        As a gym rat, you're used to thinking of how your lifestyle choices affect your body. Now it's important to also think of how your choices affect your brain. For example, along with "is this food good for my muscle function or bad for my muscle function?" should be "is this food good for my brain or bad for my brain?"

        Great places to start learning about brain health are books and PBS TV programs by Dr. Daniel Amen, the neuropsychiatrist. He's huge on nutrition and brain-healthy lifestyle choices.

        Keeping your brain as healthy as possible is your best defense against whatever MS does to it.

        Comment


          #5
          Thanks everyone for the info

          @SNOOPY: This is called Lhermittes sign.

          When related to MS it is caused by a lesion or lesions on the cervical spine.

          The thing is my spine was clean of lesions from my MRI that I had during this last symptom. And talking with my doctor he said nothing about my spine or the Lhermittes disease. And It really is not noticeable for the most part now. I have to be turned in a odd position to feel any sensation from this, or look almost chin to chest to feel a bit of very minor tingling at my lower spine level. I will get a bit more tingling if I walk quick for a longer distance, or run (exercise). I dont know much about this, but it is not even close to the tingling sensation I used to get when just looking down.

          I will keep an eye on the sensation to see if it worsens at times so I can bring it up to my doc. I have read that sometimes lesions dont always show up at the time of MRIs?

          Thanks for the info on exercising. I will have to take it easy for a while to see really what my body can handle.


          @jreagan70

          that is so untrue. Your brain is far more important.

          I do agree with that. I hope and pray that I can keep enough cognitive process to keep my job at least for the next 15-20 years. I am 34 this year and would actually like to make it to retirement age working if possible. I love my work, and the process that goes into it. I would be heart broken if I could not program anymore. I also am the only one that works in the home right now. My wife stays home with the kids, though someday she will go back to work, but she does not have a skill that will make nearly the amount that I currently do. That is one reason I hope I can keep working. All is good for now and I hope it stays that way (at least to be able to work).

          Thanks for the suggestions. I will look into the PBS programs you suggested.

          Thanks everyone. I hope to be around on these forums and become familiar with some of you in the community. Thanks again

          Comment


            #6
            Hi displayNone,

            I have to be turned in a odd position to feel any sensation from this, or look almost chin to chest to feel a bit of very minor tingling at my lower spine level.
            Lhermittes sign doesn't require turning or twisting in odd positions. It's simply as you stated, chin to chest. The tingling would only last seconds and would be felt from the spine down or some feel it from the waist down. If this doesn't fit your experience then it's not Lhermittes sign. Lhermittes sign, like any other symptom, can resolve completely, decrease to a level where it's not noticeable or be permanent.

            I have read that sometimes lesions dont always show up at the time of MRIs?
            That is true. If you have Lhermittes sign it is due to cervical spinal cord lesions, brain lesions do not cause this symptom.

            Tingling is a sensory symptom and referred to as Paresthesia. In the MS symptom forum there is a sub forum for paresthesia -- http://www.msworld.org/forum/forumdi...34-Paresthesia

            I will get a bit more tingling if I walk quick for a longer distance, or run (exercise).
            I have had this happen from the beginning. I won't notice it until I stop then my legs will vibrate/buzz excessively until I sit down and rest for a bit.

            You can exercise and do other things just know that the tingling will probably intensify, briefly, until you rest and cool down.
            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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