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saw the neurologist today...

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    #16
    No, but maybe the VA docs will check that out.

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      #17
      I went through the same thing with the doctors. Finally had MRI and then was told to suck it up and wait. Not an emergerncy until you loose control of things. Now I have to live with central pain. Keep playing the game or you will get brushed aside. I did as little as possibe before my sugery and am now fighting to recover to just being an upright moblie person. So you are not alone.

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        #18
        I am now walking with one cane & one AFO. Even the PT was wrong - although everyone seems to think it's just a matter of time before I'm chair bound from the 'damage', DJD & arthritis in my spine & knees. That's what it takes to 'win' (even temporarily) - just getting up & doing what you can when you can! I'll take what I can get!!!

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          #19
          Thanks, everyone for your advise & support. Now that I'm 'mobil', even for just the next few years, I don't feel like I "belong" anymore, so I'm heading out. Eevryone take care & I'm praying for recovery for all!

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            #20
            Hi, everyone!
            just an update...
            I'm now able tobe up most of the day, although I need to rest intermittantly. I use my mobility scooter when shopping, since it's too much pain & my leg starts cramping after about 20 - 30 minutes.
            I find that I can walk short distances without a cane, but since I have to sort of consentrate on lifting my leg to walk or my foot drags, (and I'm still pretty badly unstable) I use a cane anytime I'm not in my own house, where I use the walls & furniture to help 'stabilize' myself. My VA doctor told me that she agrees with my PT about becoming wheelchair bound again withing 1-3 years, sooner if I fall 'wrong' & further injure my spine. I can (mostly) now tell when I need to urinate, but can't "hold it" very well at all, and can't stop the stool when it decides to make an appearance. UGH!
            All in all, I feel extreamly lucky to have the extra time being mobile, but my doctors said that there won't be any surgery until my cord is more compromised...
            O-k...
            I just keep moving along & exercising, but found that any backwards bending or quick twisting movements are a so totally wrong thing to do - I lose both legs for several hours or for several days.

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              #21
              Coleen, I don't know how I ever missed these posts, but I just read through your ordeal. Wow. I am so sorry you have been given then run around but I am so glad you are proving them all wrong. Way to go. My husband has MS and at times I don't feel we belong here either but I have learned so much from this site. Please continue to come around. - Lisa

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                #22
                I'm just frustrated with the medical community as a whole. My VA doctor (I like her, mostly) said I've got a few years of mobility before it's back to the chair, and I'm going to work on making it more than that. I've pretty much adjusted to being in pain, and have figured out how to 'walk' on a numb (but painful - that's so wrong!) leg & will keep moving on as long as I can.
                Being non- tramatic SCI, even though it was 'brought to life', so to speak, by a bike accident makes one (ok, this one) a bit more insecure about joining a SCI site. I feel I've learned so much from CC, and am 'coming to terms' with my predicted future as well as my present situation. I just hope to keep my future w/c life far into the future!

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                  #23
                  I understand your insecurity about joining a sci site. As I have stated several times, David has ms, he is not sci. But he is basically a tripalegic (sp?) having only the use of his right arm (normally) the other limbs move but not as well. But I also agree that I have learned so much here as well. With the MS sites most of those people are still having their good and bad days and are still mobile. So I feel I learn more here. I know that someday, hopefully with the new drug Ampyra, he may walk again, but then maybe someday sci people will walk again too. We can only hope.

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