Announcement

Collapse
No announcement yet.

My MS story...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    My MS story...

    My MS story starts when I was a teenager in the US Army. I started to have sporadic symptoms of what I now know is MS. These ranged from optic neuritis symptoms (blurriness, "shiny confetti") and legs that would "fall asleep" for minutes at a time and be numb for a day or so. When these became more frequent the problem was I was an Army platoon sergeant with 30 or so soldiers I was responsible for. I couldn't be sick, I was trained to lead by example.

    Plus, all those symptoms had "logical" explanations and could be easily excused and written off.

    Blurry eyes? We spent hours looking through binoculars and laser targeting devices, so who wouldn't have blurry eyes? Aches, pains, and numbness? In Alaska we literally walked over mountains in winter for weeks at a time at 30, 40 and 50 below zero -- who wouldn't have gripes about that? One mantra among Army combat arms units was "pain is weakness leaving your body" (yes, with 200+ years of experience, the US military is good at indoctrination and brainwashing). The point is, there was a plausible excuse for all my symptoms

    Diagnosis: After eight years in the Army I got out and was working for a software company when I had my first major MS attack. It started with a tingling feeling in my left thumb that then spread to my hand and arm. Carpal tunnel syndrome the doctor diagnosed, but it didn't go away.

    And then the diagnosis phase started. Electric shocks to measure the speed in my nerves, spinal taps, and then MRIs, which were pretty cutting edge in the late 80s. After months a neurologist lowered the boom and told me I had MS. Then the real "fun" started with a variety of symptoms in my legs and eyes. For about a week I could not walk and could not see -- that was a wake-up call!

    I was bummed thinking of how I was going to provide for my wife and four kids, and thought I should learn braille since I couldn't see. The only problem with that was that my hands were so numb there was no way I could feel the bumps of braille writing!

    Steroid treatments that induced "roid rage" and all sorts of fun with doctors began. Asking what I could do about this disease, a neurologist recommended that I enroll in an experimental chemotherapy in an out-of-state hospital. No patient ever wants to hear the word "chemotherapy" coming out a doctor's mouth. And when you put the word "experimental" in front of it the word becomes even worse. It was about this time I started thinking doctors didn't know that much about this disease and, worse, there wasn't a whole lot they could do about it.

    My attitude was that I needed to cope with this disease mainly on my own. Fortunately, those major symptoms in my eyes and legs disappeared or dramatically reduced as mysteriously as they arrived. Great, though I was left with a left hand that was mainly cosmetic and not very functional.

    Benefits of MS: That initial MS attack was useful, however. It caused me to rethink the definition of being a man, analyze the meaning of life, and put a great deal of thought into how I was going to raise and what to teach my children if they had a father who was blind and in a wheelchair.

    This caused me to delve deeply into theology and eastern philosophy and in the process allowed me to jettison years of military brainwashing and indoctrination. Without MS it is highly likely that never would have happened. Though I was physically challenged by MS, mentally I became a much better human being because of this damned disease.

    Life with MS: Over the bulk of my late 30s and 40s I was able to rack up college degrees, work at many fun jobs, and lead a semi-normal life. But no matter what I appeared on the outside, I knew that I had MS.

    Over the years I have tried a variety of alternative treatments, everything from bee venom therapy to cannabis to radical changes in diet. While some do indeed have impacts, unfortunately I have not discovered a magic cure.

    Living with MS my default mode was to hide the fact that I had the disease. Since I was right-handed, hiding my left hand was easy. The vast majority of people don't notice MS details like a neurologist does, so a combination of compensating and not complaining or talking about the disease worked pretty well.

    There are pluses and minuses to such a hiding strategy. At work timely vacations could hide an attack or flare-up, and even some of my family members thought I did not have anything wrong with me or was "faking it." The big minus is that such camouflage reduces human interactions and sympathies and, of course, there comes a time when one cannot hide MS no matter how hard you try. That's the stage I'm at now.

    Nervous systems: My last big attack put me in a wheelchair for a couple of months, and I credit stubbornness and a contrarian attitude in me getting back to using "Canadian crutches" and then to walking. Some of the "fun" of the disease is discovering the various parts of your body that MS can impact.

    For example, one day I awoke with a metallic taste in my mouth which disappeared in a day or so. My surprise was discovering I lost my sense of taste. If you ever want to lose weight, just kill your sense of taste -- it really takes the fun out of eating!

    At this point, 30+ years after diagnosis, MS at various times has impacted all 6 of my senses. Yes, six. I include cognitive-type thinking issues -- "I think therefore I am" -- as our 6th sense. Fortunately, in me those problems come, and they go...whew!

    When impacted with those types of things, what are you going to do? You can whine and complain about them, but trust me, that gets old and doesn't do much good.

    And since you cannot do much about them, you might as well put a happy spin on them, right? Whether you laugh with sarcasm or dark humor, or whether you cry -- that is a choice. And to me laughing is a helluva lot more fun than crying.
    59M / RRMS / Dx1987 / Ocrevus

    #2
    Hi Golgotha and welcome! What a story you have to tell. I really appreciate your sharing it and like your upbeat attitude. I sure you've had some tough times to go through, as do many of us, but you seem like a warrior who has spent time reflecting and come to a good place in your life. I'm sure you are setting a good example for your children when and if they are faced with life's challenges. You are a good father.

    Thanks again for your MS story.
    Be well.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Hi Golgotha ~

      Welcome!

      Thank you for sharing your thoughts and experiences about life with MS.

      You have an incredible gift of writing!

      Wishing you and your family all the best.

      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


        #4
        Thanks for sharing.
        The future depends on what you do today.- Gandhi

        Comment


          #5
          re; WHAT AN INTERESTING STORY

          Hi Golgotha,

          I really enjoyed reading your story. You have lived quite an interesting life. Thanks for sharing.
          How long have you been on the Ocrevus? What has your experience been taking that medicine?

          Comment


            #6
            Hello Golgotha and welcome to MSWorld

            Not many stories of MS can I relate to as much as yours. We are the same age but I was diagnosed a few years earlier than you ("84"). There are some of us who were diagnosed at an earlier age that have been able to take symptoms back before the age of 18, have you? There were 2 MRI machines in the entire State of Colorado at that time I was going through the diagnostic process.

            Plus, all those symptoms had "logical" explanations and could be easily excused and written off.
            How easy it is to ignore odd symptoms and even thinking it could simply be normal I definitely did it.

            My attitude was that I needed to cope with this disease mainly on my own.
            Yes. No treatments except steroids and possibly symptom management medication, if wanted or needed. Did you have a lottery number for Betaseron?

            And since you cannot do much about them, you might as well put a happy spin on them, right? Whether you laugh with sarcasm or dark humor, or whether you cry -- that is a choice. And to me laughing is a helluva lot more fun than crying.
            I agree. Enjoying life, laughing, and having fun in spite of MS is the choice I made a long time ago. I have a warped sense of humor which, in my opinion, is needed when dealing with MS or whatever is thrown your way by life

            Thanks for sharing, I enjoyed reading your story
            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


              #7
              Golgotha,

              I think your 6th sense is working just fine! Thank you for an honest forthright account of what this disease can bring about in our lives.

              Recognizing the benefits or better said, to be forced to reevaluate, to "toss out the trash" and retain & gather what is truly important... This is true growth, maturity. We never stop growing.

              Again, welcome and thanks for sharing.

              Jer

              Comment


                #8
                Welcome, Golgotha.

                Thanks for sharing your story; I appreciate your introspection.

                I was never able to hide my MS. MS, for me, started with a bang -- an ER visit in the middle of the night followed by days of hospitalization and months of recovery. It probably took courage from you -- both initially, to hide your MS, and later, to "come out" to others with your diagnosis.
                ~ 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


                  #9
                  Hello and welcome Golgotha. Lots of life experiences seem to shape us and make us the people we are today. How did we get here ? Well it was a long road. Very interesting to read your journey. And also quite something that all of our roads ended up crossing here.
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment


                    #10
                    Originally posted by cavan
                    How long have you been on the Ocrevus? What has your experience been taking that medicine?
                    Before Ocrevus I was on Copaxone for more than a year. Now I'm coming up on a year with Ocrevus.

                    I can tell Ocrevus is an immuno-suppressant just by the way a cut on my hand will take longer to heal, etc. My infusions (3 so far, the 2 initial ones and 1 six months later) were done with benadryl and prednisone in the IV. I had no side effects -- aside from the energy boost from the predisone.

                    I have noticed some improvement in tactile sensation in my left hand -- that was nice. But I've also had what I'll call "flares" and MRIs detected no active MS. I'm curious to see how I am a couple/few months after my next infusion...
                    59M / RRMS / Dx1987 / Ocrevus

                    Comment


                      #11
                      Originally posted by SNOOPY
                      that have been able to take symptoms back before the age of 18, have you?
                      At this point I'm not sure -- that was a long time ago.

                      I was diagnosed in New England, but lived in CO as a teen while in the military, and later for a decade after getting out. With CO having the highest rate of MS in the country, it makes me wonder... (I always wonder what the root cause(s) of MS is.)

                      Originally posted by SNOOPY
                      Did you have a lottery number for Betaseron?
                      Oh no, after getting the recommendation for experimental chemo, I took the attitude of "Physician, heal thy self" and was on no MS drugs for 10-15 years.
                      59M / RRMS / Dx1987 / Ocrevus

                      Comment


                        #12
                        Originally posted by 502E79
                        I think your 6th sense is working just fine!
                        Thanks, but I'm sad to say it isn't. I spent my working years in both computer science and/or education, so I pay attention to my thinking. Once I excelled at multi-tasking, now I'm a single-tasker. My short term memory is shot and I sometimes get "waves" of spaciness that makes me feel like I'm turning into a vegetable.

                        But what can you do? I just fight the feelings, seek to change my environment/what I'm doing when that happens, and work to stay mentally sharp. Well, that and try to eat an insanely healthy diet.

                        Anyone have any recommendations for mental clarity/brain health?

                        I eat some CoQ10 every other day or so, I avoid grains in general (advice from the Grain Brain book) and I've found that avoiding gluten is one key for me.

                        I can eat wheat/gluten with no problems and just feel fine. But every time I stop eating gluten and cut it out of my diet, in about 7 to 10 days my mental clarity will undergo radical changes for the better.

                        It's like before I was in a drunken, hang-over phase, and after stopping gluten I'm sharp as a tack and it's like someone added 10 or 15 IQ points -- an improvement so dramatic that I happily avoid gluten (which is a PITA since gluten's in everything it seems).
                        59M / RRMS / Dx1987 / Ocrevus

                        Comment


                          #13
                          Gol,

                          You composed a comprehensive introduction to MSW. Your point of view was arrived at through decernment, without overwrought emotion. You are still applying / learning ways to continue, even thrive despite this crappy disease.

                          So, some cog fog, even more pronounced at times, isn't throwing you off course regarding what really matters.*

                          I think the diet is important and everyone here knows I push the exercise as much for mental clarity as any reason.
                          I stand by your acuity, your 6th sense may not be what it once but we adjust right?

                          Jer

                          * See #3 of Pennstaters gratitude for week of 1/17.

                          Comment


                            #14
                            What´s the back story on the forum name?

                            If you are game for CoQ, you may want to try ubiquinol (precursor to CoQ) along with PQQ (they are synergistic) and alpha lipoic acid- see Oregon Science and Health University studies.

                            Thanks for your service. I hope that your military records can be located as there may very well be a VA benefit.

                            The only help for the cog decline I´ve found is to write notes and lower expectations. There´s no upside to expecting what I used to be able to do, failing at it and berating myself. I´m more like the engine that could and I go slowly, not the bullet train.

                            Comment

                            Working...
                            X