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Thread: My MS Story!

  1. #1
    Distinguished Community Member SalpalSally's Avatar
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    Default My MS Story!

    At age 23/24, while I was going thru a very stressful and scary event, I had
    my first notable MS symptoms. Didn't know it at the time and not bad enough
    to seek a Doc, I just rode it out. Had some scarier symptoms in my late 20s to
    early 30s, got married at 29, had a Child at 30 and still no Doc.

    At 34/35, had my first MS exacerbation and ran to the Docs. After a bunch of
    probing and treatments, Doc sent me to a Neuro and he put me in the hospital
    for a week of tests. After a myleogram/spinal, the MS DX came. I suspected
    and was ready for it...sorta...

    I had many symptoms over the next 17 years, but really had MS Lite, until my
    2nd mega exacerbation at age 53. that was the end of the beginning or the
    beginning of the end? Went thru several Attacks & Meds over the next ten
    years, came here in about 1999and then at about age 64, strolled over the
    bridge to spms. Stopped all of the usual DMDs and started LDN.

    And here I am at 75 yrs young, none the worse for wear, 50 years after my
    1st SX, 40 yrs after my DX, still going strong, although doing most of my
    traveling in my scooter. I intend to see, at least. age 90,(God willing)

    I'd love to hear/see your stories, if you have one.
    Please post it here! Thanks!
    Love, Sally


    "The best way out is always through". Robert Frost







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  3. #2
    Distinguished Community Member SalpalSally's Avatar
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    That's my short version, Yours doesn't need to be.
    Love, Sally


    "The best way out is always through". Robert Frost







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  5. #3
    Distinguished Community Member Pegakafarmgirl's Avatar
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    Hey Sally,, here's my story..

    back about 35 years ago, I had symptoms, {high fevers, rashs, joints swelling,}so our hospital ran tests, and they shipped me off to the Mayo Clinic, in Rochestor Mn..team of doctors, did their own testing, and find out, it was Still's disease,,a form of juvenile arthritis,,, ascription, controls it, but then 6 months after the fact, I came up with more symptoms.. went to Ames. spinal tap,,,,it was MS, scared the crap out of me, never ever heard of it, so we researched . and found a chiropractor, who works on MS patients, which did work,until, I progressed,, went through, the shots, IV treatments,pills, stem cell, so far everything I try has made things a little worse, so not on anything, right now,,
    " Don't outsmart your common sense"

    Peg

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  7. #4
    Distinguished Community Member Howie's Avatar
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    Cool

    Well let's see. When I was 44, 1998, I was working on my racecar's body, and I thought I had something in my eye. I decided to go to an eye doctor, and check it out. I picked one that was near my work place. Paying no attention she was a Neuro-Optho .

    She said it could be several things, but when she said tumor, my hearing stopped. She ordered an MRI.

    So the next day, I got the MRI. It was the little tube, but an interesting experience.

    I met her at her office the next day, a Saturday, and her office was normally closed. I waited out front, she arrived and complemented my pink car. Got the news it was MS, and I chuckled because it wasn't a tumor.

    Several months later, I had a terrible exacerbation that ended my working days. No noticeable exacerbations since, but very slow progression.

    I've never taken any of the MS drugs, but still walk (like a drunk) and drive. Balance is my worst problem.

    PS Thank goodness for Auto-saved!
    Roswell was a gift.

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  9. #5
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    So I was 35, working with people with mental retardation and other disabilities, some of which were seizures. I started falling down a lot. Id be walking on a perfectly flat surface, and suddenly find myself on the pavement. Once happened in the middle of traffic, as I was crossing the street. Talk about a traffic jam! Anyway, I thought I had a seizure disorder. So went to a neuro, expecting that diagnosis. A few tests later (long before MRI"s), I was diagnosed with MS. 2 months later I woke up one morning and realized that my legs were not working! Couldn't walk from bed to bathroom. I called the neuro, found myself in the hospital. By nightfall, I had no sensation from middle of chest to toes, my left arm didn't work, my right arm was weak, my left eye didn't move, my right eye was having trouble moving steadily. I laid in bed for 2 months, with docs and I hoping I would recover. Finally after a massive couple of doses of ACTH (a form of steroids) things started to come back, slowly. I was in the hospital another month. Released in a wheelchair. Over the next several years (after a bout of pulmonary emboli) I moved from the wheelchair to a walker, then 2 forearm crutches, then a cane, and back again. I'd wake up in the morning and "do inventory" -- what mobility devices would I need to get through my day? I was working full time for 3 years after the diagnosis, then moved away, found part time employment and some volunteer activities to keep me busy.

    When Betaseron came along, I applied for the lottery -- yes, there was a lottery in those days, and if you "won", you got the Beta. I was accepted. I was on Beta for years, and had no exacerbations. I was using 2 forearm crutches, and a wheelchair for long distances. 17 years ago I moved to this place in the country and switched doctors about 8 years after that. The new guy was convinced I no longer needed the Beta, that the "ms burned itself out, at your age", and so stopped it. A year later I had my first major exacerbation, and now have had one annually. And now I'm housebound, have a huge ugly pressure sore, lost 65 pounds over a course of a year, got malnourished, and am struggling to even be able to transfer from wheelchair to toilet, bed, etc. Should never have stopped the Beta. I'm on Techfidera nfor 2 years, but don't know if it's working or not. Darn near died this summer, not specifically from the MS, but from the pressure sore and infection...
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  11. #6
    Distinguished Community Member BBS1951's Avatar
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    These are interesting and heartbreaking stories. One lesson I learned from Cats is that MS doesn't burn itself out. I wonder if your neuro who stopped Beta knows what happened. It could make him more cautious with future patients?

    Sal, what a good idea to have us post stories. I know I remember the people, but forget the stories. I had forgotten Howie and Pegs stories.

    Here is mine:

    Like many of us, I had vague symptoms since my 20s-- periodic crushing fatigue was all. At age @ 40 I got tingling in my hands, crushing fatigue, bizarre outbursts of laughter,
    heaviness in pelvic zone. I asked my GYN and he replied, "What could possibly cause such disparate symptoms? " to which I said "How should I know? I thought I could tell you
    and you might say, "It's the Tinkleberry Syndrome" ...


    Two months before my big attack at 47, am now 63, I thought I had a bladder infex but the tests were normal. Then, my legs began to hurt and I felt like I was walking through molasses, needed a wheelchair for mall shopping. I gradually regained much of my functioning but not all.

    Then it was MS Lite, just many mini flares, until 7 months ago-- wham! Legs and one arm became heavy and some spasticity. I am still trying to go into remission from that.

    I took Avonex 2003-2004. In midst if injecting faulty batch, I nearly died from it causing
    attack on my lungs and heart with permanent damage. So, I haven't done Meds since. I do Swank Diet and Ceylon cinnamon, rest 1-2 hours day, work only part time, swim daily, surf every week. Since my last attack, I can only stand up on smaller gentle waves. Big waves I have to lay down on or ride on knees. No big deal really.

    8 weeks before my first big attack, age 47, I read that people only get MS under age 45. i shouted out to my husband, "Yay! One good thing about being 47 is I am too old to get MS" ...Dang it!
    Last edited by BBS1951; 02-10-2015 at 03:52 PM.


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    A story about MS and me well................

    In August of 2000 we had our County Fair the day we came home from the fair my son and I started to unload the last of the 4-H and FFA animals afterwards we went to unhook the stock trailer the hitch stuck on the ball I did what every smart farmer does I straddled the hitch and yanked up on it. My back popped, it was so loud my son said "dad was that your back that made that noise?" I was down on all fours, I went back to work the next day and didn't make it to lunch I went to the doc and he gave me the normal thing for a sore back-pain pills and muscle relaxers it didn't get better finally they tried a head MRI later that same day he called and asked me to come in after office hours.
    He put up the x-ray in the light box and said see all these white dots? Well they are not suppose to be there. You have MS. I cant believe you are even able to walk.

    I knew something was wrong for a few months before. I had blinds installed in my office as I would nod off in the afternoons and I mean nod my head would hit the desk top. I could hardly walk to my office. That was the deciding factor in retiring. I had a long talk with a good family friend who happen to be the head of the internal affairs dept. He told me that he had seen me trying to walk and said "Gary you have been in corrections for too long you KNOW what happens when inmates think you are not 100% you and I have been friends for many years our kids grew up together, please put in your papers, its time to go.".



    I never worked again. At that time I farmed hay and we had the largest grade A goat dairy in the Pacific Northwest. We had 300 on the milk line plus dry stock, bucks and yearlings. Close to 500 total. In addition I was also the director of the physical plant department for the largest prison in the state of Oregon. It was (and still is) really hard to go from full speed ahead to unable to do much of anything. I often Long time members will probably remember I tried to keep farming for a couple of years afterwards. I even bought a bar and we ran it for a few years after farming. I just cant do the hours anymore.


    I am one of the few that when I applied for SSDI I was approved before the 6 month waiting period. They took one look at my MRI and figured he isn't going to make it more than a couple years at most.

    I tried most all the DMD. Nothing does much for me any more. As the disease has gotten into my brainstem it has affected my autonomic nervous system at times my blood pressure shoots through the roof and my kidneys quit and my potassium was way WAY too high. I spent 2 weeks in ICU and they told my wife to call the family he had less than 10% chance of surviving. I have also gone septic twice.

    The only thing to get my BP out of the stroke zone is steroids. I usually have a serious exacerbation every year and at least a couple of smaller ones.

    So now I try to putter around an hour or 2 every day other than that the dogs, cats and I are in charge of the couch and the TV remote.
    Last edited by Gary; 02-11-2015 at 12:08 PM.

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  14. #8
    Distinguished Community Member SalpalSally's Avatar
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    Thank you all for you Stories!!!
    I am so glad I started this thread.
    Love, Sally


    "The best way out is always through". Robert Frost







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    No one else?

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    Distinguished Community Member nuthatch's Avatar
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    August 1999 I took my teenage kids to the Santa Barbara Bowl to see a B.B King concert for my 47th birthday. It was a scorching hot summer afternoon and we had to park and walk uphill for what seemed like miles. I remember clearly that I could not cool down like everyone else and felt like (and probably looked like) a limp rag all evening. The next morning I woke up with a semi-asleep right leg that wouldn't wake up. When it didn't get better after a week, I decided I must have a pinched nerve in my back, so I dragged myself to a chiropractor. After three treatments with no improvement, he told me to go see my GP. Xrays and tests run, then sent on to a neuro, who did yet another slew of tests including lumbar puncture, MRI. Los of lessions on brain and spine. MS diagnosis within 3 months.

    The first 4 years were rough, attack after attack, even though I was on a DMD. Did the solumedrol routine 6 times during those early years. I've experienced too many MS symptoms to list here, some of which resolved, others that never have. I had to quit working within 3 years (I taught reading but was having double vision, mobility problems, fatigue). MS landed me in a wheelchair in a short 5 years. Then about 7 years ago both knees buckled while I was transferring into the shower. Blew both ankles out, so can no longer stand at all . . . sucks! I also suffer with serious lymphedema problems in both legs and feet, which I believe is nerve related. I'm wrapped like a mummy from the knees down daily and have been unable to wear shoes or slippers for years due to swelling.

    Like so many others, I had vague symptoms for years but just wrote them off as nothing.

    I decided more than ten years ago to try LDN and am glad I did. Slowed the progression considerably. I'm grateful that MS didn't really rear it's ugly head until my kids were raised. Thank goodness for my husband - - - couldn't have made it this far without him.

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