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HSP does anyone else have this

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    #1

    HSP does anyone else have this

    While in ER the neuro suggested that I may have HSP hereditary spaticity praplegia I think it is called.Is anyone around been diagnosed with this as well.
    My neuro nurse says no you have MS ?
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    #2
    Have you had a MRI? I for one know nothing about HSP. No doubt you'll have googled it by now.
    The neuro nurse is a nurse, not a neurologist. You need to talk to the main man/ woman.

    Comment

      #3
      I haven't heard of the other, but I concur with Thinkimjob. You need to get an MRI, that's the best way to Dx MS.

      Annie
      Disabled RN, Cardiac Intensive Care
      Dx'd 11/03/2005, Sx's for 15+ years prior
      STOPPED DM's 10/15/2010, last one, Tysabri

      Don't ask for a better life, ask to be a stronger person!

      Comment

        #4
        further update

        I do have MS was DXd 2010
        however after an ER episode the neuro mentioned above to me.
        however since then my MS specialist did say i have all the symptoms of HSP, except for one conclusive thing that determines i have MS.

        The HSP does not show any lesions on the brain, MS does and i have the lesions.

        Comment

          #5
          I have had the blood test for HSP. It is a very expensive test.
          My neuro suggested it as I always want to rule out everything else.

          I have had a peculiar course with MS.

          I don't have many brain lesions and the one I have could be contributed to other things I am told.

          I have spinal lesions.

          After I was test for HSP they explained that it has many variations but the test only isolated a small number of them.

          So it wasn't really useful.

          We are still going with the MS diagnosis.

          I am the fourth person and third generation with MS in my family.


          We do symptoms management with Neurontin, and ITB.
          I have responded to IVSM and didn't think Copaxone was doing enough so my neuro suggested switching DMDs.

          During the interim, I had progression. So this helps validate the MS diagnosis.

          Take Care

          Comment

            #6
            I have only had one IVSM. 6mo after my MS DX. I an a retired/disabled Pediatric nurse. I am on Gylenia a PO med for MS.

            I do not want to go to the hosp and leave my 74 yr old husband and my pups at home alone! PLUS! I worry what the IVSM will do to my system! My medical memory abt meds is not so good anymore! Maybe brothrgoose could help out here .

            I do know my BS went up over 500 and you hear all the time how athletes use these types of drugs and end up in terrible condition's.

            I apologize for sounding so ignorant these days but I REALLY can't remember!!
            Sissy

            Comment

              #7
              I AM ON TYSABRI NOT SURE EXACTLY HOW IT IS DOING,SOMETIMES I FEEL IT'S OK OTHERS NOT SO GOOD.
              I AM HOPING TO RETURN TO WORK TOMORROW AFTER BEING OUT FOR A FURTHER 3 WEEKS AFTER GETTING A FLU LIKE VIRUS THAT ELEVATED MY TEMP,I CANT STAND HEAT OR COLD AND IT REALLY MESSED ME UP TO THE POINT OF BEING PARAPLEGIC FOR 3 DAYS.
              SCARIEST TIME OF MY LIFE
              AT THIS MOMENT IN TIME I DO NOT SEE THAT BEING A POSSIBILITY GOING BACK TO WORK TOMORROW.ALL I CAN DO IS HOPE..
              I WAS ON THE IVSM 3 TIMES FIRST TIME I STAYED WITH IT 3 DAYS DID NOT APPEAR TO HELP, HOWEVER 3RD TIME SEEM TO WORK WELL HAD A WEEK OF ALMOST NORMALITY.
              BUT THIS IS ONE OF THOSE THINGS WHERE IT WORKS FOR SOME BUT NOT FOR OTHERS.

              I HOPE YOU ALL FIND SOMETHING THAT WORKS FOR YOU.

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