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Long Strange Trip

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    Long Strange Trip

    I'm sure this is the same old story. Something not right. Doctor blowing you off and acting like it's age, lifestyle, or in your head. In retrospect, I believe I've been suffering from PPMS going back 10+ years, but wasn't diagnosed until December. I'm 50 now. This was only after I insisted on being seen by a neurologist. At that point my former doctor pulled out the reflex hammer and had me walk a short bit and concluded there was something neurological going on.

    My sister was diagnosed with RRMS the previous year. This was also passed on to my doctor who dismissed my symptoms as non-MS and stated that it's mainly a female disease. He did the same when I explained i had symptoms similar to my mother's fibro-M. I was tested for RA, Lyme, and spent a summer going through every test. I was sent for carpal tunnel release surgery because that was what it was, and not MS. You can imagine the results. No change.

    Being diagnosed with PPMS has been an interesting experience. I wasn't prepared for how it would dump my belief system on its head. The realignment of priorities and values, etc. To be honest, that portion has been very cool and not something everyone gets to experience. Making you stand naked and see who you really are.

    I'm sure my frustrations are shared by many. Not knowing what will work from one minute to the next. Episodes that are severe, and offer a glimpse of what's to come. Not knowing what your progression pattern means in terms of longevity and quality of life.

    I played soccer for almost 30 years. I love riding horses and playing cowboy. I would hike long distances over tough terrain. I went from riding horses in October to having a cane and walker around, not knowing which I'll need. Periods of not needing either for short trips. Taking the cane "just in case", not knowing if I can make it 100yds without it. The stability of the walker and it providing a sense of "normalicy". Finding that if I have so much as a cold, a hot shower will drop me to my knees.

    So little information available to gauge your progression. No clue if you have a year or 20. Prior to any mention of MS, having an internal feeling that you have about 18 months to live with no clue where it's coming from. Not the usual depression and thoughts of a foreshortened life. Repeatedly reading that they will watch you for years before rendering any sort of decision regarding prognosis, yet not knowing if you'll be around that long. The intensity of symptoms constantly increasing. Moments where it takes 4 hours to remove your shirt. Friends asking if they should call 911 because you became unresponsive and your pulse drops to 30 and weak. Knowing you need a nap, but knowing that afterwards it will take an hour for your body to become functional.

    Lesions on the brain (24), t-spine (6), brain stem, polycythemia vera, and partial collapses in the lungs. Throw in normal wear and tear and it becomes a mess to sort out and determine what is MS and what is unrelated. Questions about whether to be treated for one thing knowing it will prolong life so you can lie in filth and drool unable to move.

    Throw in sorting out whether the condition(s) drive thoughts and feelings. Victims of abuse often have feelings that generate their memories. "I feel this way so this is what must have happened." Are the symptoms driving the same type of thought process? The MS Hug and such mimicking anxiety so your brain and body respond as if it's an anxious moment?

    Ya, it's an ugly situation to be in. It's not without positive aspects. I hope I hit a plateau at some point where I can breath without a curve being thrown to take my mind back to what I'm dealing with. Almost six months of rapid deterioration and it gets old. Between managing life and making sure you don't develop somatic based symptoms, and each day can be tricky.

    #2
    Wow! I am hoping things stabilize for you now. You certainly have a lot going on alongside MS and it does get old.

    I will be praying that things start to heal.

    What treatment are you on?

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      #3
      So Sorry

      I'm so sorry it has been so terrible for you. It is very frightening not knowing how bad the future might get. I do my best to not think about it but I'm not always successful. In fact it sometimes consumes me. But on some days, it's better, and I do my very best to enjoy those as much as my physical limitations allow.

      I hope you get some relief. Thank you for sharing.

      Comment


        #4
        Thanks

        Thanks! There's a lot to balance in life. I keep a positive outlook in terms of attitude. The lack of education, even in the medical field, is the worst part. When I went in to have the issues looked at for my wrist, I told my doctor that my sister has RRMS. In addition to telling me it's primarily a female disease, he said he doesn't think I have MS. I wonder in hindsight, why he thought it was carpal tunnel given how I told him the symptoms presented. "Stiffness and numbness radiating down my left arm, starting at the scapula. Only around 30% feeling in my left hand."

        I try reminding myself that with PPMS there's not much he could have done if he properly diagnosed it in the beginning. Of course, there's the "what if" aspect of the argument in my head where you wonder if quality of life could have been improved during the past 10 years.

        I do get frustrated reading information. It always says, "From time of diagnosis." Is that from when it should have been diagnosed? I see so many posts and know several others with MS. My sister was diagnosed almost immediately because her doctor's father had MS and he considered it from the word go and tested. Then there are those like me who post, "I'm pretty sure I had it for x number of years prior to diagnosis.

        I'm very analytical and look for patterns and understanding. The lack of information is annoying. The emphasis on best case outcomes is everywhere. I understand the whole "Keep positive thoughts" approach, but there's not much in terms of worst case. As my condition worsens, it would be nice to see tips on when someone should start preparations for the next phase. I don't want to waste a good day preparing for bad days that could be years away. As I'm sure is the case with most, if not all, who have MS, those good days are precious.

        My records also show polycythemia vera, a slow progressing blood cancer. Lesions on the brain and along the spine from the t-spine up. The whole range of bladder/bowel, ED, balance, gait, coordination, cognitive impairment, loss of weight, strength loss, no fine motor skills. Throw in numbness being at around 90% in my left hand and around 30% loss of feeling in the right. There are periods lasting many days where new symptoms present, or others intensify. There are times when in a matter of hours, I may have an episode where I can't do something I did an hour ago. All you can do is look up and say, "Nice one God! Well played!

        I have a very good friend who is one of the top neurologists in the nation who is fantastic as a sounding board for answering questions and who offered to look at my MRIs for free. My primary MS doctor is also one of the top in the nation and associated with the university, and the MS Center focuses only on MS. At the same time, my brother-in-law's sister has PPMS and went from going to the gym to paralyzed from the neck down in less than 6 years.

        Faith helps a lot. Knowing there is a better place waiting at the end means no fear of dying. I'm either right and can't think of a reason why I'd want to prolong dealing with this in this world, or I'm wrong, in which case, I'll never know. It opens the door to an entirely new line of questions. "Do I want treatment for the PV only to prolong life so I'm in a pool of filth and drool later, or do I let it run its course and opt for the risk of heart attack and stroke, and getting out before that point?"

        It's a constant mourning process of having to accept the loss of things you could once do. I believe the depression often associated with MS is more a factor of people stuck in a mourning process and the next starting before the previous one has finished. I know it's a constant battle to remind myself of all that I still have. Tough when you know it's likely temporary, but you fight every day.

        Thanks for listening. It's nice having a group of people who "get it" and the seriousness of the situation.

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