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Folks with MS (or possible MS)...a bit of a rant

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    Folks with MS (or possible MS)...a bit of a rant

    ...just checking to see how many other folks are here with MS or "possible MS"...

    I have a spinal cord injury and possible MS which makes things rather complicated. I see a neurologist and a physiatrist (sp?) but sometimes get the feeling that neither really know what to do with me......my neurologist gets frustrated sometimes and just says, "well, your neurological examination is all messed up because of your spinal cord injury..."...

    Anyway, I have crappy insurance right now...I just had some follow up brain and spinal MRI's and have gotten huge medical bills for the portions that are not covered. I feel like I'm in limbo and have very little access to good medical care...and even the equipment I need...I'll quit rambling now...I'm just feeling really frustrated.
    "The truth will set you free. But first, it will piss you off." -Gloria Steinem

    #2
    I cant tell you how many times I have been checked for MS. My former doctor seemed to fixate on that as the possible cause of my problems with balance neuropathies, muscle wasting and weakness for years and years. And the pain! All she kept doing is prescribe narcotics which never did anything. It's a good thing I'm not an addict.

    I never had enough spots on my brain. (But tell me, are ANY spots good?) All they had to do was scan the cervical verts to see the problem Stenosis. It has many similar symptoms. I definitely know the frustration you feel. It seems that if you have overlapping or atypical symptoms, they just throw up their hands and say oh well.

    I concede that I do wonder if there isnt a possibility that there isn't some MS type thing going on. The heat bothers me so bad. I get very weak and by the end of summer I cant see because even my eye muscles get into the act, with my left eye pupil opening independently of the light condition or even the other eye. At first I thought I was having a stroke Then the muscles that move the eye dont want to keep up with the other and I have double vision. Then the back of the eye becomes inflamed and excruciatingly painful to even move. This goes on until about New years when the weather has cooled down for a time.
    Last edited by skippy13; 28 Nov 2008, 6:42 PM.
    Anything worth doing, is worth doing to excess

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      #3
      Thanks, Skippy, it is frustrating...and you're right...lesions on the brain are NEVER a good thing no matter how many or few you've got!
      "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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        #4
        You might ask them to include the brain stem in the scan if you ever decide to do another. The little buggers (spots) can hide there too.

        Going semi blind every year isnt fun either I wish they could figure that part out for me. I have to drive with one eye shut so I dont drive in the early winter at all.
        Anything worth doing, is worth doing to excess

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          #5
          Originally posted by skippy13 View Post
          You might ask them to include the brain stem in the scan if you ever decide to do another. The little buggers (spots) can hide there too.

          Going semi blind every year isnt fun either I wish they could figure that part out for me. I have to drive with one eye shut so I dont drive in the early winter at all.
          I've had a lesion in the pons area of my brain stem. OMG, I wouldn't wish it on my worst enemy!!! It caused ALL KINDS OF NEUROLOGICAL CHAOS...I think I lost about 30 IQ points for about three months or so, along with a lot of function on the entire left side of my body. Just when I was finally getting better from that, I had my SCI.

          Do you have double vision or blurry vision? I find that I go through periods of time when my vision is quite blurry for a week or two. I deal with it the best I can and it always clears up on its own.
          Last edited by Danine; 28 Nov 2008, 7:12 PM.
          "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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            #6
            And I have been checked for MS three times since 2002. But to find out if you have MS or not, they have to check the spinal fluid too. Then you get the right answer. I did not want to do that, because I did not have any spots in the brain.

            Spots only is not enough indication for MS. Spots can be many things. Do you have any Scandinavian ancestors? They say that mostly Scandinavians or poeple with Scandinavian ancestors have it. I don't know why. Just like 1/3 of Scandianavians have a gen so they can't get HIV because the Black Death mutated a gen here of the survivors from it.
            TH 12, 43 years post

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              #7
              It may never be determined what it is that affects you so. Meanwhile you have to go on and adapt to whatever changes occur. I pretty much stopped looking for answers and just started going with the flow and making my life more comfortable. It is much less stressful. Its just the way I am made and I accept it as part of me.
              Anything worth doing, is worth doing to excess

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                #8
                Originally posted by woman from Europe View Post
                And I have been checked for MS three times since 2002. But to find out if you have MS or not, they have to check the spinal fluid too. Then you get the right answer. I did not want to do that, because I did not have any spots in the brain.

                Spots only is not enough indication for MS. Spots can be many things. Do you have any Scandinavian ancestors? They say that mostly Scandinavians or poeple with Scandinavian ancestors have it. I don't know why. Just like 1/3 of Scandianavians have a gen so they can't get HIV because the Black Death mutated a gen here of the survivors from it.
                I asked my neurologist about doing a lumbar puncture. He said that it would be abnormal because of the SCI and would not help to "confirm" the MS diagnosis.

                I am of Irish and German descent and my ancestors have been in the USA since the early 1700's. I've heard that the incidence of MS is higher in people who live the first decade of their lives in cold climates; but haven't heard about the Scandinavian connection---other than Scandinavian people tend to live in cold climates.

                I have always lived in the Southeast U.S. where the climate is hot in the summer and mild in the winter. I had a Great Uncle who had MS, but my neurologist doesn't seem to believe that there's a genetic connection. It's weird...every doctor seems to have a different perspective on things...you'd think they were all reading different neuro journals or something.
                "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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                  #9
                  Originally posted by skippy13 View Post
                  It may never be determined what it is that affects you so. Meanwhile you have to go on and adapt to whatever changes occur. I pretty much stopped looking for answers and just started going with the flow and making my life more comfortable. It is much less stressful. Its just the way I am made and I accept it as part of me.
                  That's the approach I try to take as well...just gets frustrating sometimes. When I get angry about being in limbo, I just remind myself that it wouldn't really matter if I knew. My current insurance wouldn't pay for the injections anyway, so I couldn't do anything different than I'm already doing for it. I understand that the injections cost between $12,000-$18,000 per year.
                  "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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                    #10
                    At what/which hospital was your diagnosis set?

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                      #11
                      Originally posted by woman from Europe View Post
                      And I have been checked for MS three times since 2002.
                      Where?

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                        #12
                        If you ask me, it was the nevrologic section at Ullevål. They are the specialist of MS in Oslo. They say no spots, too strong arms so no MS. I took a lot of other test too, EMG, EEG, MR, CT and so on and did not show any signs of it.
                        TH 12, 43 years post

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                          #13
                          And with MS you don't show any lack of sensation.
                          TH 12, 43 years post

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                            #14
                            Originally posted by woman from Europe View Post
                            If you ask me, it was the nevrologic section at Ullevål. They are the specialist of MS in Oslo. They say no spots, too strong arms so no MS. I took a lot of other test too, EMG, EEG, MR, CT and so on and did not show any signs of it.
                            The other two places then.

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                              #15
                              LOL, same place. I belong to Ullevål. I did it in 2002, 2004 and 2006. I got a physician referrel in 2000 and waited for 8 months to come inside for the tests, The tests took 2 years and I was finished first time in 2002. Still they did not believe it because they knew nothing about SCI and aging so they started again 2 years later. Then in 2006 they let me stay in the hospital for two weeks and I took the tests again.

                              They know a lot about MS there, but nothing about SCI.
                              TH 12, 43 years post

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