Discussions By Condition: Medical Stories

neuroligical disorder, PLEASE GIVE ME A HINT WHAT TO DO

Posted In: Medical Stories 2 Replies
  • Posted By: Catherine Joyner
  • February 17, 2008
  • 03:40 AM

Hereditary spastic paraplegia (HSP), also called familial spastic paralysis

thats what a dr told me years ago that I have. Basically my legs arent bad they are just misunderstood, thats what I tell people.

I cant walk very well at all, I have drop foot syndrome, my legs freeze up like Frankenstien, I can hear dad yell at me, pick up your feet when you walk, but I cant.

I cant feel my legs right, its not that I cant feel them at all, if you step on my foot it hurts, its just different then the sensation any where else. I got stung by a bee once, didnt feel it for over ten minutes then it hurt like ***l.

I feel like I need a cane to walk, I cant play with my kids anymore. Im gaining weight because I cant exercise. The older I get the worse its getting, and the drs are just like umhumm. Thats it, they have no clue. People ask me whats wrong with me, do I have one leg longer then the other. They had me wear braces on my legs about 5 years ago and that screwed up my back. I have to see a massage therapist every two weeks just for my back and thats very expensive. I have eight siblings all having some sort of neurological disorder all with different symptoms. They change all the time, so people think Im faking which sucks. Some people say I need strengthing exercises, other doctors have said exercise is the wrong choice. If I dont exercise they get worse, if I do I fall and get hurt. CAN ANYONE GIVE ME A HINT WHAT TO DO?

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2 Replies:

  • you dad needs an education; he is insensitive...you need physical therapy and OT by a qualified therpist. I'm surprised the doctors didn't refer you. You basically are getting bad medical care. If your parents don't do anything, you and all your brothers and sisters are left to deal with it when you are adults, which is probably too late. Tell your mom you want to start fresh with new doctors and specialists and that you need PT.
    Monsterlove 2,921 Replies
    • February 17, 2008
    • 08:34 PM
    • 0
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  • Im sorry I reread what I wrote, and I did sound like a child. Im turning forty this year. Unfortunately you as a child medical attention was never offered. I just saw my siblings for the first time in over 15 years. We were all together to bury my dad...He did better for us then his parents did for him. However I still dont know what to do. Ive seen neuroligist, Ive seen chiropractors, Ive even seen a bone specialist. The older I get the worse it gets and Im afraid of what 45 might have in store. I do have lyme, caught it about three years ago and was treated promptly. Im worried for my children as well. My legs started in my teens, my son Matt is now 14...Does anyone have any clues about tests or something???? Kind of embarresed to ask help for on the computer, but Im not sure what else to do
    Catherine Joyner 1 Replies
    • February 17, 2008
    • 11:54 PM
    • 0
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