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20 year dx of RRMS...now in Limbo!

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    20 year dx of RRMS...now in Limbo!


    New event happened on Aug13th am. Lost strength in legs. Could not pivot/move right foot to turn. Legs started shaking violently. fortunately had cell phone on walker
    tray, called 911. Did not fall, emt's guided me to floor etc. First was sent to Mclaren hospital in Lansing Michigan where a certain MSU neurologist ...without viewing any current MRI for new plaques, decided I did not have MS after 20 years but does not know what exactly is wrong causing all symptoms of RRMS. On sunday August 21st,
    was transferred to U of M hospital where I still reside. I am now in on the rehab floor
    with a projected first discharge date of September 9, Still don't have a 'label for symptoms' so...I have been 'limboized'.

    Just needed to vent...Rehab unit is great at U of M btw,
    ~life has ups and downs...I try to go in circles~
    dx'd rrms in '97

    #2
    Originally posted by Anomalie View Post
    Just needed to vent...
    Go right ahead Anomalie, sounds like you have a good reason.

    Did you ask the Neurologist what he was basing your misdiagnosis of MS on? Through the years I have seen those with MS get diagnosed, undiagnosed, some are diagnosed with MS again and some are not. Glad to hear the rehab unit is great. I do hope the issue of MS or not is settled soon
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      Sorry to hear that you had a problem, as well as being "undiagnosed".

      I don't understand how he could undiagnosed you without looking at the MRI. It is used in diagnostic process for MRI, si how can it be ignored when undiagnosis?

      Hope you fell better and have a quick recovery. Glad to hear you are in good therapy hands.
      Kathy
      DX 01/06, currently on Tysabri

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        #4
        Wow, that must have been a horrible shock. How unsettling. What are they saying the other possibilities are?

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          #5
          So sorry to hear you are cooped up in the hospital! Though I agree that UM Neuro rehab is nice--great staff, not super noisy, and decent meals. There are a few good MS neurologists at UM, they'll get to the bottom of things. The MS clinic at Wayne State also has some stellar specialists. I hope you're on the mend soon.
          RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

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            #6
            thanks to all that responded....

            The nureo who said I did not have MS, had never seen me at the MSU MS clinic.
            Came into the room at Mcclaren, announced I did not have MS, then sat down and held out his hand , palm out towards me like a stop sign and said..."thou shalt not speak until I give you permission to speak" just as I was about to assertivily (sp) challenge his remarks. He said all my MS syx. come from a severe cervical stenosis at C5 and C4 areas.

            Both my entire feet except toes feel like I have heavy compression socks on, even my soles of my feet and half way up my calves. still have all the other normal MS effects like numbness, tingling, fatique, extreme muscle weakness etc.
            I am hoping things get resolved soon...
            Again thanks for all your thoughts
            ~life has ups and downs...I try to go in circles~
            dx'd rrms in '97

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              #7
              Dr at MSU showed me my MRI, and said "here is why they think you have MS". Then proceeded to show me the door. He was NOT about to formalize my MS Dx or treat me.

              MSU was a TOTAL, COMPLETE worse than useless trip!

              I have a U of M specaiist, thru the VA Dx w/"long standing RRMS"

              Now I would not even take a hated dog to MSU.

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