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Neuro Myotonia

Tracie
Tracie Member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
I have been disabled for 14 years with a Neurological Disease called Neuro Myotonia. It has left me with violent Spasms which are controlled most of the time with medication I'm on. I am in constant pain from shooting pains that shoot down my spine all of the time. I have no standing or walking ability and I have no sensation below my waist. I have weakness in my left arm and little sensation in both hands. It also has left me with the inability to remember things in the present such as people's names or appointments or my medications etc. I have also lost some words I used to know which is very frustrating. 
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Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Tracie welcome to the community.

    I am sorry to hear you are struggling, are you getting any support?
    Scope
    Senior online community officer
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  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Hello Tracie and welcome

    I am so sorry that you are having such a bad time

    Is there any thing we can help you with ?

    CR
    Be all you can be, make  every day count. Namaste
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  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @Tracie

    Good evening & welcome !!! 

    I’m very sorry to hear about your current troubles.

    I have been dealing with a Neurological Condition since 1998.

    Please please let me know if you would like any help/support ????

    Many thanks.
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  • Tracie
    Tracie Member Posts: 3 Listener
    Tracie said:
    I have been disabled for 14 years with a Neurological Disease called Neuro Myotonia. It has left me with violent Spasms which are controlled most of the time with medication I'm on. I am in constant pain from shooting pains that shoot down my spine all of the time. I have no standing or walking ability and I have no sensation below my waist. I have weakness in my left arm and little sensation in both hands. It also has left me with the inability to remember things in the present such as people's names or appointments or my medications etc. I have also lost some words I used to know which is very frustrating. 

    I also forgot to mention that I was diagnosed with Cancer 2 years ago and I'm currently on Chemotherapy. 
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  • Tracie
    Tracie Member Posts: 3 Listener
    Has anyone whose disabled had to go for a Pip assessment. I had to go for one today. I am in a Wheelchair and have been disabled for 13 years but I’m so worried about loosing my money and the car that we rely on we have an hoist in the back to put my powered wheelchair in the back. Has anyone else been through this please xxxxxxx
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  • Ghostship
    Ghostship Member Posts: 5 Listener
    edited August 2018
    I have had a neuro illness since Feb 2012. When I was diagnois with Sub Acute Denegeration of the Spinal Cord due to B12 Defiency for life.  I wear splints to stop my feet Spasming.
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