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Just tired

  • By Mspbfh2

    So this is maybe just a pity party, and if you are already feeling down, don’t read! I’m fortunate, I know, but I’m just so tired of having people questioning how “sick” i am. Right now just want to cry and at stupid things. The long term disability insurance company has decided that if I was really as sick as I say, then I should be on a disease modifying med, and because my neurologist made a note that I said I’m fine I should be able to work. Now this neurologist (an expert in MS) as decided that I probably have PPMS, but a slowly progressing (I said I was fortunate) and that meds aren’t effective. I had taken meds initially but they made me worse! so I stopped. The previous neurologist thought I should suck it up and just tolerate the side effects. Really? MS isn’t bad enough? Anyway, now I have to prove again, that I can’t work any more. I’m 62 and a nurse. My biggest issues are COGNITIVE and fatigue which get worse with stress. So if I make a mistake I can HARM another person. I’m “fine”, meaning way fewer symptoms (esp the trigimial neurology) since I no longer have the stress of working. So now I have to fight again. I can still do things, it takes me awhile, but I can vacuum, go grocery shopping, etc. of course that means I’m done for the rest of the day and then I take my nap. My cane and I can walk for quite a while. So I am lucky…so why do I feel like I wish someone would just put me out of my misery and the misery of those around me?

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  • By Nadine Shapiro

    MS fatigue can feel like beyond just tired. I was dg. at 23 and about 6 years later I applied for SSDI. Like you, I looked fine. At the time I was told fatigue was the main reason people w. MS go out on disability. I had been fired and it was then I realized I had cognitive issues – again, invisible. The fatigue and cognitive issues were debilitating. I miss working so much…..
    Don’t think I’m liking your neurologist much…..

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  • By Kim Dolce Moderator

    Hi Mspbfh2,

    At 62, you are eligible to retire and take regular Social Security. If you don’t want to do that, you can always file a claim for SSDI. You would be eligible for Medicare 24 months after you start receiving SSDI. Then at age 66 or thereabouts, your SSDI would automatically convert to Social Security and the amount would remain the same.

    I retired on SSDI four years after my diagnosis of RRMS. I won my claim on the first try. I know what you mean about missing work, and there are ways to work that you can handle. I found a second career using the skills I already had, and I work at home and choose my own hours. You can find work while you are on SSDI through the SSA’s Ticket to Work program. You can also network with your colleagues and professional associations to find a work situation that suits you. Another way to create a paying job for yourself is to first volunteer at something you enjoy doing. It can turn into a paying situation down the road.

    To echo Nadine’s sentiments, I don’t much care for your neurologist, either. They are all so different, and I guess we always have the option of finding a new one once we get sick enough of who we are seeing now.

    I hope you’ll come back and vent some more whenever you need to. Pity parties are always welcome here at multiplesclerosis.net. If it makes us feel better, then why not 🙂

    Kim

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  • By Mspbfh2

    Thanks for the support. After I reread my post I realized why you said you don’t like my neuro, who actually is great. She made a note saying I am fine (which is what I said, which is true on the MS scale…I can walk, do housework, etc. and I meant it that way). It was the long term insurance company that said I should be able to work. I am on SSDI, and just a few months ago started Medicare. The long term insurance helps bridge the gap bet SSDI and what I made as a nurse of 35+ years. I got SSDI first try, which the lawyer was shocked by; he had told me usually was denied, then an appeal, then maybe even a second appeal. I had to be evaluated by SOcial Security docs. and THEY are the ones who upheld the disability. It is just humiliating to be treated as a malingerer, which I have NEVER been. I am really, really good at hiding how much I hurt, and how much I am frustrated by the cognitive problems.

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  • By Diane

    Is there anyone out there going to try stem cells with CellTex out of Houston.
    Has anyone done the stem cells. Want to know if you had any positive results before
    I spend a lot of money and travel to Mexico? Appreciate any input!

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    • By Nadine Shapiro

      diane,
      i’ve had stem cell therapy (hsct). you can read a little about it under my story.
      https://multiplesclerosis.net/stories/least-moderate/
      i think the chemo part of what they do at northwestern is critical. wouldn’t trust anywhere else. maybe you can even get into a trial? there is a closed fb group about hsct at northwestern. if your interested let me know and i can give your name to the moderator.
      dr. burt has treated other ai diseases with hsct and at this point in time, i believe it’s one of the only legit ways to possibly stop and maybe improve your ms.
      i would definitely suggest asking that question about celltex on the dr. burt fb group.
      nadine

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    • By Diane

      Nadine,
      Thanks for your reply. Will consider your suggestion. Will see if I can get a reply from
      Dr. Burt fb. Thanks. So glad you are doing well.
      Diane

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  • By Nadine Shapiro

    Diane,

    You can friend me on fb. i am nadine shapiro. i can then request the
    moderator of the dr. burt hsct group to add you to the closed fb
    discussion group.

    It’s a great group and is so helpful if you’re looking into HSCT.

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  • By Mspbfh2

    So, just an update (and another rant, sorry). The long term insurance company STILL hasn’t decided to pay, and this is after 8 months and my jumping thru all their hoops. Whatever. I have doing ok, not too many episodes of trigiminal pain, legs feel weak, but have only fallen once recently, and I can function around the blurred vision and cognitive issues. So of course, the meds I have been on for several years now will no longer be on the Medicare advantage plan I have!! Just left a msg for my neuro, but don’t know my options at this time. It just feels like an emotional roll a coaster. It really, really doesn’t help that the weather has been very, very hot and humid for nearly a week (even though I have been staying in as much as possible, 105 degs is not fun)!! Just feeling like f£}*]€|*#€ it all. And now I get to go out, run my errands, and get ready for dinner with my family (my grandsons always make things better!).

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  • By Mosticks

    Mspbfh2,
    New here and just read your OP. I can totally relate to your situation, I was a Respiratory Therapist for 25+ years and had to walk away because of the cognitive issues. It wasn’t safe, too easy to make a mistake and cause real harm. Only my boss knew I had ms and why I quit, kinda amazed me none of my co-workers knew, so I must be good at hiding things too. Just wanted to say I understand how hard it was for you to leave nursing and why you did it. The stress and fear of making a mistake was unreal. Hope things work out for you.

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  • By 10bsu79

    New here. 66 and a retired Canadian teacher. Very impressed throughout this thread by the ethical concern for the safety of your patients and stepping away from something enormously important as your career. MS certainly didn’t take away your professionalism nor your caring nature.

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