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Diagnosed with Shingles-Looking for others to discuss the MS norm

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    Diagnosed with Shingles-Looking for others to discuss the MS norm

    Hi all-its been many years since I have been on the forum-but need to get some feedback from people that have "been there and done that" I have the relapsing form and have been very blessed since starting on Tecfidera approx. 3 years ago of no relapses since that time.

    This week I was diagnosed with Shingles. I knew the week before the rash started that "something was up" because I was exhausted, achey, headache, and almost typical flulike symptoms. I have chronic chest wall weakness and neck due to the areas of my lesions-and this was REALLY exacerbated. So I am 48 hours on the Acyclovir. Went to the GP for that.

    Contacted Neuro and was told to stop the Tecfidera. (Scary SCARY-but understand the rationale for doing so) Up until this am I was still having new rash areas breaking out but seems to have slowed down. My lesions are the worst on my back-around my bra line area and then extend up to my shoulder. I also have them on the front of my chest and down my arm.

    I have tenderness pretty much anytime anything touches my arms- I am guessing where that nerve runs down the arm? Does that sound reasonable even tho there is no rash in some of those areas.? Also this afternoon I am developing that same deep "bruised" like feeling in my waist when I lay on it and that hip down that side and back of my leg. Is it normal for the ENTIRE side of the body that is affected to be involved?? I thought it was a certain level that typically caused a line of discomfort.

    I kid you not, I am uncomfortable from the right side of my face-just beside my ear-all the way down to above my Right Knee. And it is compounded 100 fold by the headache, flulike achiness, major, major fatigue and now the blister formations of the rash-I'm really not sure which is worse the rash or the flulike achiness and muscle weakness. Is this a typical Shingles outbreak for a MS patient? Would I even recognize a relapse if it were to occur?

    Please share your experiences if you have had shingles while having MS and any suggestions on how to get thru this would be greatly appreciated... Thanks so much! Elliebelle

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi elliebelle

    I've only had shingles once but they are pretty bad. I had terrible leg pain and didn't know what was going on. The next day the rash showed up from my mid back in a straight line right down to my right knee. My doctor said the virus lays dormant in your spinal cord until it becomes active. Mine was an S 1-2 dermatome meaning it was dormant in my that area of my sacral spine

    Yours must be higher on your spinal cord. The pain and flulike symptoms didn't last too long for me and got better each day. Although it was bad, I was so relieved it wasn't a relapse. That was three years ago. It hasn't come back
    again, thank goodness.

    Hope you feel better soon.

    Comment


      #3
      Thank you so much AriD for responding! Its nice to discuss with someone who can relate. MS is bad. Shingles is bad. But having them both STINKS! But I am sure everyone who has co-diagnosis' feels this way.

      I had told my husband the morning before the rash showed up that I thought I was having a "new mystery MS symptom" or a relapse. So thankful it wasn't! But I am ready for the shingles to GOOOOOO!

      Do you recall how long it took until you were back to your normal? And if I may ask, did you have chronic MS pain before the shingles hit? If so, was it hard to describe the pain because of that reason? My normal MS pain is d/t chronic muscle spasms and weakness of muscles in my chest area but it has been tenfold since all this has been festering.

      Also who managed-your neuro or PCP?

      Comment


        #4
        I do have leg weakness, muscle spasms, and neuropathy. So when the severe leg aches and weakness started, I was so scared that I was headed into another relapse. I had just gotten back to my regular work schedule.

        The next day when the rash showed up, I went to my PCP who treated the shingles. The leg symptoms only lasted a couple of days, the rash and sores about a week I think, then back to baseline. Took acyclovir for the shingles.

        The shingles were bad but a relapse would have been much worse. I'm in the midst of another relapse, out of work almost three months with a lot of new symptoms. Shingles at least is gone in a couple of weeks even though it's miserable.

        Hope you feel better soon.

        Comment


          #5
          I am so sorry AriD to hear that you are presently going thru a relapse. They are so scary, frustrating, and exhausting on every level possible (emotionally, physically, financially, mentally)-so my heart goes out to you. I have had MS for over 12 years now with several relapses-my scariest being optic neuritis and completely lost vision in my left eye for close to a month. But thankfully it was temporary and the -only residual from THAT particular bout is a naggy eye pain when I get too tired (I call it my "check engine light"-it reminds me I need to slow down a bit and rest for "me" maintenance or I WILL end up broke down on the side of the road!!) I've actually learned life lessons from all my relapses!

          I know that the shingles will pass and will be ready to start back on the Tecfidera as soon as the MD states it is safe. This too shall pass or I will just have to learn to suck it up buttercup!

          In the meantime-I will keep you in my thoughts and prayers for a speedy and complete recovery from this episode...Take care
          Hugs
          Elliebelle

          Comment


            #6
            Thanks. Keeping you in my thoughts and prayers as well

            Take care

            Comment


              #7
              The biggest problem with MS is that there is NO norm. Hope this painful issue will start to settle its ugly head down as soon as POSSIBLE.
              Peace to all,
              LM
              RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

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