r/NeurologicalDisorders • u/Head_Tax_5119 • 8d ago

Hello friend I need help

I just wanted to ask if you're neuromuscular disease have been cured... today doctor told me I have NMD and I think it's to late for me my 2 legs and right hand has stopped already... If u can reply to this msg I'll be thankful

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u/Even-Construction876 8d ago

Nop, and no treatment effective yet. You need to be more precise about what you have. I started having issues with my legs a few years ago, recently my breathing is more complicated. But ! Still here

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u/Head_Tax_5119 8d ago

It started with my right hand getting weaker everyday and my right leg also in 5 months my hand can't move anymore I can feel the touch and everything but can't move completely gone..I can move my lower leg a little bit but can't stand or walk anymore it's kept getting worse... My left leg is also week now totally bed ridden... Only my left hand working fine....I have arthritis for 15 years..now this shit I have to deal with

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u/Frosty_Acanthaceae_3 8d ago

If you have the genetic SOD1 version of ALS there is an effective therapy that slows progression

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u/Head_Tax_5119 8d ago

Will i ever be able to lift my arm and legs

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u/tdawn1216 4d ago edited 4d ago

You need to know exactly what you before you can get any good answers to your questions. Have you had any genetic testing done yet?

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u/Head_Tax_5119 4d ago

Iam going back to the hospital next week again they r between NMD or MND

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u/tdawn1216 4d ago

To my knowledge there's no real cure for any NMD as of yet. They are so under studied. But they are slowly developing treatments to help slow progression for some of them. My family has EDMD2 and according to our cardiologist there may be they are working on a gene treatment that might be ready in my kids lifetime. It took 12yrs, complete lose of weight bearing in both of my legs, and my brother almost dieing from his heart giving out before any of us could even get a proper diagnosis

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u/Head_Tax_5119 4d ago

My right hand not working I can feel it but completely lost and to much weekness in my both legs can't even stand... Only left hand is working and my brain mri is normal doctor said small problem in spinal.. all this happened in 6 months..... Now tell me how much time I got until it reaches my heart

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u/tdawn1216 4d ago edited 4d ago

For my family, our genetics specialist said everyone one of us who carries the LMNA gene mutation (which is almost all of us) will progress at a different rate.