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    I am new here too. My story...

    Hello all --

    I am 38 years old, male, and dealing with some very confusing health conditions. I am currently awaiting my first Brain MRI, Spine CT, and EMG. Kind of bracing myself for the bad news based on whats happening. Figured I would set up shop here and get acquainted.

    I had clinical mononucleosis about 12 years ago for a solid 6 weeks. My understanding is that this increases your chances of developing MS by nearly 20-fold. In addition to this, and just prior to my current symptoms, I had the Hepatitis B vaccine. Which is also heavily tied to MS. So I am pretty much toast....

    I began getting bouts of sudden weakness several months back, that flushed over me like hot water, making my thighs, legs, and body immediately weak. This would only happen when I wasn't getting good rest for several days but it was sudden and harsh. It would last until I got a good nights sleep and recur again several weeks later. Always such a strange feeling of goosebumps and waves of weakness all over me. Especially when I was out in very hot temperatures (i was in Arizona mid-summer). Would have to go inside just to cool down.

    Around Sept 1 I found a swollen gland in my groin and soon after came down with a flu-like syndrome that lasted only a handful of days. The doctor put me on Augmentin 875 and that seemed to help, but eventually made me feel terrible. So I quit early.

    3 weeks later my fingers and arm started twitching. I developed muscle spasms all over my body in random locations. Popcorn pop feelings in my legs, arms, scalp, and finger twitching that wouldn't go away. Within a week of this, my left foot started getting bouts of numbness, followed by pins and needles, and then a flushed, cool feeling afterwards.

    The muscle spasms were the most noticeable factor, but other things arose. Fingers were extremely sensitive to cold. Holding a refrigrated bottled water felt like holding an ice cube. Fingers bright red and frozen. Feet would feel like they were burning when I got in the shower, even though the rest of my body felt only "warm" water.

    After a solid 2 weeks of muscle spasms and twitching, they have subsided noticeably. But the problems in my left calf and food have gotten worse. I am finding it difficult to walk around with shoes on. Foot feels swollen and hot. Very uncomfortable. As if there's too much blood pooled in my foot. If often burns and aches pretty badly. Elevating my foot seems to alleviate this, but I can't lay down all day. I need to live life.

    Last night my calf muscle began vibrating and tightening up quite a bit. I was consciously avoiding a cramp that was on the verge of happening all night long, as it continued to Tighten and stiffen up and spasm.

    Symptoms seem less during the day and worse at night. I am on all the supplements (vitamin D, b12, complex, magnesium, coq10, ALA etc etc etc).

    Blood tests for deficiencies are all normal. I have very elevated Epstein Barr Titers (Greater than "8") still, nearly 12 years later, and am considering Acyclovir to see if that helps.

    Im really at a loss as to what is going on. I was perfectly healthy before my last Hep B vaccine shot and everything has gone down hill since. I am single, alone, and lay in bed all night with nobody to talk to or turn to. I am not mentally or physically equipped to deal with disability taking over my body at such a young age. Yes I consider 38 young still. Maybe because I have no family and no children yet.

    Super lonely. Super depressed. And super sad.

    Tuesday is my Brain MRI and Spine CT scan. I have an EMG scheduled for Thursday. I guess this week is when I find out the bad news. Honestly not sure how im going to be able to handle it alone.

    #2
    hang in there

    First, I want to say you are not alone. This is a great place to get advice/help/support, and it's open 24/7. I think waiting for an answer is a very hard stage to go through.

    I was dx over 4 years ago and am still working full time. Good days, bad days etc but life goes on.

    Keep in mind that this is a process. I had to have a lumbar punch for a firm diagnosis. Please keep us updated as you go through the tests. There are a lot of people here who've gone through similiar things and can offer a lot of help to newcomers with questions.

    copaxone, LDN, vegan, gluten free

    Comment


      #3
      Hi Spectrum,

      I agree 38 is still young. You still have alot of life ahead of you. MS is not a death sentence. You will have good days and bad days but make the best of it. I am still very active on the days I can be.. On the days my MS tells me to sit. I sit.
      limbo land for 1 year and 4 months DX February 2012 Copaxon February 2012 for 6 months. No DMD's since.

      Comment


        #4
        Hi Spectrum

        Gee I never heard about mononucleosis or Hepatitis B vaccine...don't believe everything you read, they haven't found a cause, but are getting closer to a cure. When I found out about my M.S. there were not any medications other than steroids..talk about depressing!

        So hang in there..I was 33 with my first major flare so your age is in the range. You may not have M.S. and if you do, it's not the end of your world.

        Take a deep breath, and come back and see us..good luck
        Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

        Comment


          #5
          Welcome to MSWorld, Spectrum!! I am so sorry you are having a difficult time right now and I pray that you will find answers quickly. I know that you are in the "waiting" period, a place that many of us know well, but Please try not to think the worst and know you have us to turn too when you are feeling lonely, sad and scared. If you do get a dx, there are many meds and treatments to get you back to feeling better.

          Please let us know of the outcome and thanks for sharing your story. Sending hugs your way~~
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Pep Talk from Fireguy

            Well sir, as everyone is different and MS affects each in various ways. Let me just state that I am a male and was diagnosed at 38. I am now 48 and am still an active Firefighter in Texas. Just me talking...don't be your disease. Be a warrior that researches your enemy, knows your own weaknesses and comes up with a plan and a regimen that works for YOU. Good luck sir.

            Comment


              #7
              Hi Fireguy

              what a great peptalk!! Hope you give all of us some more (especially these newbees )...

              Thank you
              Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

              Comment


                #8
                Thanks everyone! Tomorrow is my MRI and they want $4700 cash from me for it. I guess tahts what I get for choosing the cheapest PPO insurance with the highest deductible.

                Comment


                  #9
                  Wow...healthcare costs in the greatest country in the world !!
                  Don't be surprised if you are advised to have a couple more MRI's. While you are in the testing stage, you should get your vitamin D and B-12 levels tested. It doesn't hurt to be in the high range with these vitamins. Your vitamin D level should be 50ng/mL to 80. If it is between those readings, that's good.

                  Even a little higher than 80 isn't a problem. Approaching 100ng/mL may be a problem. Check it out. Your MD will tell you 30ng/mL is OK. I am not a doctor, so believe what you will.
                  Low B-12 levels are considered a problem as the symptoms mimic MS. Be aware of that. You can work on these deficiencies with supplements. Doctors will want to correct them with IV shots. Do it and see if your condition improves. Good luck

                  ** 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. **

                  Comment


                    #10
                    mirror mirror on the wall

                    hello spectrumFL

                    I visit you from the southern depths of limbo land with a history of hep b vaccine and epstein barr, normal blood work (sort of) and taking all the supplements

                    heck i even presented (in the recent, longest, most severe, and can't ignore this anymore had to see a neuro relapse of whatever this is) with burning feet syndrome which sounds similar to what you are saying. in my case my feet on fire day and night with no redness and got worse lying down at night, screaming like a banshee. tramal, vitamins, they sucked most of the blood out of me (pathologists are VAMPIRES, lol). didn't work, the other symptoms came back and got worse and now i'm buggared waiting for the dx

                    and like you - well this is what i sense in your post - you're a text book information junkie that seems to be trying to deal with this limbo by playing the doctor. here is what i got told and it is so true - it's great having information and asking questions but it's not a good idea to play both roles at once. here's why. you're filling your head with more and more maybes. you're already stressed. put the two together - whammo, it all gets jumbled up. and if it really is MS, or even if it's not, stress interferes with your health.

                    so the best thing you can do right now is look after yourself by taking it easy, go on a holiday, chill out etc. you're getting all the tests done, you'll get an answer eventually, so it's time for a break.

                    (says she who has tabs open in firefox about various issues) ok i will listen to this advice too.

                    hugs and good luck
                    ---------
                    Wishing everyone luck and as many good days as possible.

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