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    1. Member baun's Avatar
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      09-01-2016 10:06 AM #1
      As the title states. Last week I was diagnosed with Multiple Sclerosis. My only experience/knowledge of the disease is what I saw that my father in law went through and it was worst case senario. He was diagnosed over 30yrs ago when treatments weren't really anything and was in a catatonic state before my wife and I even met and passed 4yrs ago. So my initial response to the diagnosis did not go over to well. Honestly was more concerned about my wife at that point. After the diagnosis I was admitted to the hospital for an IV drip of Solumedral(sp?) While being stuck in the hospital for the weekend I started researching. I know treatments have come leaps and bounds. All things considered I think I'm at least in a good position. 32yrs old, exercise regularly, eat healthy, rarely get sick, non smoker, moderate drinker, and general over all health besides MS is pretty on point. Every doctor has said my blood work looks great. Ive been staying pretty positive about the whole situation. Basically the whole point of this post is I'm looking for any stories/advice you or maybe a family member or friends have experienced with this disease. I have an appointment with an MS specialist coming up in the next week but the more knowledge I can have the better.

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    3. Member damion16v's Avatar
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      09-01-2016 12:23 PM #2
      My dad was diagnosed with MS (funny enough) 30 years ago, and I believe he had what is now Secondary Progressive course. He had long declines with a rare relapse here and there, there was one month where he didn't need crutches and he actually played pitch and catch with me. As far as his physical symptoms: moving around got more difficult as time went on to the point that he was on crutches, had leg braces and sometimes used an electric scooter-majig. Towards the end he started losing bladder control and had issues with his vision as well. When he was stressed out, his body responded in kind and movement became difficult. He was a chain smoker and tended to sit around and watch TV, which I think only made him worse.

      To top it all off he was a recovering alcoholic & drug addict with bipolar II so the deck was really stacked against him, so much so that on his nth suicide attempt he was successful. The main thing I stress to anyone having to endure this ****ing cruel disease is no matter what, keep your head up, never let yourself feel like a burden. Whatever issues you have going on in life can get amplified because of this change, and it became a cycle for my dad: "I can't deal with this disease, so I'm so depressed I need a drink. My child found me drinking and I'm a failure. I can't manage my job or go visit with friends or take my kid to a baseball game so I'm a failure. I'm a burden so I should just kill myself." Granted, he was an extreme case but it becomes a slippery slope. It's a disease that can easily knock the wind out of your sails, and I've heard of good folks getting really beat down by it.

      I had a landlord in college with Primary Progressive MS and she never let it stop her from doing anything. She owns a realty/development company and has always kept herself moving or mentally active, when her physical symptoms slowed her down. She's still kicking (sometimes literally, I see her around) 17 years later, which I would attribute to better treatment and being engaged. Having seen family members with chronic ailments of various kinds, I swear their attitude about it determined their outcome.

      It sounds like you're already in about the best position you can be in regarding your whole health. Keep it up and best of luck to you!
      Last edited by damion16v; 09-01-2016 at 02:12 PM.

    4. 01-06-2017 03:29 AM #3
      Sorry to hear this.
      I know a few people diagnosed with MS, they are all still very active and these MS is very stable.
      So, don't give up hope. 20 years ago being diagnosed with MS was terrible. These days, a lot can be done preventing collapses.

      I hope you'll be among the lucky ones!

    5. Member XClayX's Avatar
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      01-06-2017 11:52 AM #4
      Its tough news to hear. 11yrs ago I was diagnosed with type 1 diabetes, in near perfect health. The doc said sometimes it just happens to people. I know T1D and MS are completely different animals but I know what it feels like to hear this type of news from a doctor. Its life changing...devastating even. I'm not the kindof person to burst into tears, but I clearly remember those words cutting me like a knife. Just earth shattering.

      I admit I know very little about MS. In my experience with dealing with an autoimmune disease is to learn as much as you can. It gets better over time, adopt a healthy lifestyle it helps. Find a support group, I really recommend it. Even a Facebook group. Just a area where you can vent/ask questions to someone who is in the same position as you. Sure not a place for medical advice but often times you get good ideas.

      Exercise. The days/weeks I feel the best and have the best BG numbers are the says I get my butt off the computer. Get a work out buddy. I'm not sure if MS is the same but it can't hurt. Distress as well.

      Do your best to keep your head up. Bad days arn't the end of the world. The biggest issue for T1d is burnout, no one talks about it. Another hard thing is being sick... and not looking sick. Sounds stupid but it I get it all the time, feeling horrible at times but looking completely fine.



      Don't give up, seriously, this isn't the end of anything. Its just a new chapter.

    6. 02-15-2017 09:37 PM #5
      <--- Quite familiar with M.S. Do you know what subtype you were diagnosed? Tecfidera, Avonex, Copaxone, etc. started yet? Most common is relapse remitting. Age of onset is typically 3rd decade of life. Did brain MRI evidence an abundant amount of white matter FLAIR hyperintensities were revealed?

      1) Movement in all extremities
      2) Sensation in all extremities
      3) After a presumed flair, do you commonly return to baseline level of function?

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