Neurological conditions
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Paralysis in legs starting in mid twenties now in wheelchair

cburden1608cburden1608 Member Posts: 2 Listener
my dad was able to walk perfectly fine until his early twenties, his ankles began to turn in and he had poor balance. This continued until he had to walk w a walker, in which he did for yrs but bc he was basically walking on his ankles they became very swollen and is now in a wheelchair in his 50s. He had multiple test done 20 year ago including Blood test, mri, cat scans. They ruled out most things such as MS. He has two brothers. He is the oldest, his middle brother is in his 40s and walks fine, his younger brother in his 20s began the same symptoms as my dad and is now wheelchair bond. The dr said it hasn’t progressed any further. They believe it’s a missing protein or enzyme my grandparents are missing and wanted to do more testing on him, his parents and the younger brother in which my grandmother refused. He was told over twenty years ago that it could not be passed on to his children, but without the help of his brother or his mother there was no more testing that could be done. His dad passed away 5 yrs ago, him and his mother no longer speak, and the youngest brother suffers from some sort of mental retardation that his mother denies he has and refuses to do any testing... I have two siblings we are in our 30s and 40s and walk just fine. Is there a new/old name for this or anything anyone has experienced that is similar? 

Replies

  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    Difficult to understand why you are asking this on here as we are not doctors. There are a few things that could cause the foot to turn in but Dystonia comes to mind as it can be inherited. Probably whatever it is was more about mistreatment than any serious diagnosis. If it were a functional symptom for example then it probably just got left until it became an issue. Are you worried you will inherit it:? I wouldn't worry about it because even if it was functional or organic dystonia they have treatments for that kind of thing now anyway. 

    I'm glad you and your brothers can walk fine. I hope it stays that way. 
    A laugh a day keeps the psychiatrist at bay. 
  • SunshineLouSunshineLou Member Posts: 93 Pioneering
    Hi @cburden1608,

    Just a couple of instant ideas, none of which are probably correct though.
    FND, TM, ADEM.
    They're the only conditions I personally know about which can cause paralysis.
    I had ADEM and was paralysed for 6 months.
    I now Chair the dorset support group for the TMS (Transverse Myelitis Society).

    Probably won’t help but you never know x
  • cburden1608cburden1608 Member Posts: 2 Listener
    Worried more so that it could effect my kids or my niece and nephews. My dad never got an answer to what it was and bc his mom and brother refused testing that hit a road block in any more testing they could do after given yrs of numerous test. And I’ve tried googling to see if I can find something that sounds the same but none are a match so I thought maybe people would have suggestions to get me in the right direction 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,182 Scope community team
    Hi @cburden1608 and a warm welcome to the community! I am sorry to hear about this and I understand how unknown it all must feel. It may be useful to be referred to a geneticist who will be able to carry out tests and look further into the cause of the paralysis.

    If there is anything else we can do then please do let us know. :)
    Community Partner
    Scope

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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Maybe research HSP..hereditary spastic paraparesis....and ask about genetic testing....
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