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  • echobird
    Ok been getting worse off this year. Can't get up hardly anymore I have to use this leg lift thing to get my legs into bed or out of bed. Can't really do much exercise but at times my muscles will start spazzing and my arm and leg would just start jerking around. My left leg will shoot straight up into the air. And the pain will have me screaming from it and that will last for 3-4 hour's at a time. Then I'm getting electric shocks through out my body used to only go up my spine into the back of my head and make me fall from it and I'd be shacking on the ground from the pain. But something changed and it stopped happening like that and now it just goes down my left arm and leg. And as I said up to 4 hours I'd go through that I'd say. Then I can't even be touched on my spine or back because of the pain it causes. Not even a hug😢. And most of the time it fills like my spine is swelling up and the rest of my body. I've tried pot with little luck pain pills even tried my fentanyl patches again no luck. Talk to the pain management Dr. He thinks it's the MS the physical therapist and orthopedist think it's the spine. I even asked about tems unit from the pain Dr his response oh they cost like$1500 he was trying to tell me. I found them on eBay some under $20 just ordered one. I hope it works. But at this point nothing has gotten any better only worse. And I'm to the point of going board and care or nursing. I don't know what else to do. Anyone know of any in southern California between Palm Springs to Joshua tree or indio or banning? Like right now I might have to use the toilet again but don't know if I can get back up!😭😭😭. It's been this way for awhile now.
  • maria1
    Hello bird, I have been wondering how you were doing, sorry it is not good news, I wish for you better days. Please consider call the National MS Society go to the support section up at the top of the page, at the support page the contact us down at the bottom of the page and click to have the pop down page for you to fill out to get them to call you, so you can find out what you need in your area.

    It is good you tried everything in your power to feel better, it stinks that it did not work for you. P am still wishing for you better days. best regards, maria
  • echobird
    Hi Maria I'm able to walk finally some more today. But unfortunately my spasms are still acting up I think I was upright for too long idk. I had gotten sick last month about the 13-14 and that might have accounted for my MS to have worsened temporarily idk. But I still can't keep living like this. I might go down to stay with my girlfriend. Or she might want to live up here but I think it will be too cold this winter to stay up here.
  • starjackioaz
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    fireboy and watergirl
  • maria1
    Hello bird, glad you are feeling a little better, and for sharing the news with us. Your well being is a concern for us. So keep getting better and taking good care of yourself.
  • MS_Navigators
    Hi Echobird,

    This is Steve with the National MS Society. 

    I'm so sorry to hear you are going through so much!  I wanted to encourage you to reach out to one of our MS Navigators, and we'd be happy to help you through this process, and see what options you may have.  You can reach us by calling 1-800-344-4867 option 1, M-F 6am-4pm PT.  I also wanted to provide you the following link, which will provide information on nursing/care facilities located in the Palm Springs, CA area.

    https://www.medicare.gov/nursinghomecompare/results.html#loc=92264&lat=33.8302961&lng=-116.5452921
      
    Take care,

    Steve