My younger cousin has severe Dystonia, anyone know of anything that could possibly help?

[FrancisK]

As the title says, my younger cousin has extremely severe Dystonia. His mind is totally fine his body just completely failed him, he's a really good kid in his late 20's now and he doesn't let it hold him back from life the best he can but sometimes he is just debilitated. He gets the best medical care in the world, when he was young and it first started his father flew him around the earth trying to see doctors and it just is what it is.

We have some great minds on this forum, minds that think outside the box beyond what a doctor following a script knows. I don't know, it's a total long shot but even just a dumb supplement or something which MAY do something....my heart goes to the kid all of ours in the family does. I would give and do anything to help him.

Thank you brothers

 

[KingOfSushi]

All that comes to my mind off the top of my head are B vitamins and E

 

[qbkilla]

Fuck sorry to hear that. I know nothing about it but googled it and sounds like coulee autoimmune? Complete long shot but I have heard of people using carnivore diet...lion diet and having great success with auto immune issues. Only thing I can contribute maybe worth a shot

 

[bbxtreme]

That’s a tough one and very sorry to hear. Stem cell therapy has been used as a treatment to regenerate nerve cells. In a unique case like this and if resources allow for it I would contact Dr. Kahn. This would likely be something he would have a unique treatment for.

From a supplement standpoint I would consider adding Mucuna Pruriens (L dopa) as increasing dopamine levels seems to be a key piece in treatment. I have never seen it used in a case such as this, but have with Parkinson’s and used at a high enough amount made a good impact on symptom reduction.

 

[DecaForDessert]

All I can think of is:

Magnesium, muscle relaxant

B6, helps with dopamine synthesis

Vitamin D + Omega 3, anti-inflammatory

Taurine, aids in muscle control and reduces cramping

Maybe NAC? Incredible antioxidant, and its been studied in movement disorders

 

[FrancisK]

Thank you very very sincerely for the replies gentlemen, I am going to research all of these things

 

[alfresco]

That’s a tough one and very sorry to hear. Stem cell therapy has been used as a treatment to regenerate nerve cells. In a unique case like this and if resources allow for it I would contact Dr. Kahn. This would likely be something he would have a unique treatment for.

From a supplement standpoint I would consider adding Mucuna Pruriens (L dopa) as increasing dopamine levels seems to be a key piece in treatment. I have never seen it used in a case such as this, but have with Parkinson’s and used at a high enough amount made a good impact on symptom reduction.

Read, if you haven’t, Awakenings by Oliver Sacks. He experimented with LDopa early in his career with great success but was unfortunately short lived. (And got a lot of shit for it to.)

When I read the OP’s top post I thought of all the work that has been done with Parkinson’s (neurological) and can see the similarities. Interesting.

And to the OP . . . sorry to hear of your “situation”. After reading your post it is obvious you care very much about him. He is fortunate to have you in his life.

I hope we find a cure. It is a terrible disease.

 

[FrancisK]

Read, if you haven’t, Awakenings by Oliver Sacks. He experimented with LDopa early in his career with great success but was unfortunately short lived. (And got a lot of shit for it to.)

When I read the OP’s top post I thought of all the work that has been done with Parkinson’s (neurological) and can see the similarities. Interesting.

And to the OP . . . sorry to hear of your “situation”. After reading your post it is obvious you care very much about him. He is fortunate to have you in his life.

I hope we find a cure. It is a terrible disease.

You don't know the half of it brother I appreciate the well wishes and thoughts, he's confined to a motorized specialty built stretcher. Even still he always has a smile on his face, he's written a book, has started businesses, comes to all the family gatherings when he can, likes to party and he's handsome, very handsome and really intelligent......his body has just completely failed him. His father is my uncle and godfather, he is the greatest man I've ever known and is incredibly successful and will help anyone any way he can, he is revered by everyone that knows him as he should be. He went broke more than once trying to get him help from anyone and anywhere, his sister also has dystonia but it's not as severe, but it just got worse and worse as they got older. Lately it has been really bad and his father is much older now obviously and is suffering health issues himself. I would do anything to help them, all of us in our family would.

 

[FrancisK]

That’s a tough one and very sorry to hear. Stem cell therapy has been used as a treatment to regenerate nerve cells. In a unique case like this and if resources allow for it I would contact Dr. Kahn. This would likely be something he would have a unique treatment for.

From a supplement standpoint I would consider adding Mucuna Pruriens (L dopa) as increasing dopamine levels seems to be a key piece in treatment. I have never seen it used in a case such as this, but have with Parkinson’s and used at a high enough amount made a good impact on symptom reduction.

bb thank you sincerely brother, can you tell me how I would go about finding this Dr. Kahn you mentioned?

 

[bbxtreme]

bb thank you sincerely brother, can you tell me how I would go about finding this Dr. Kahn you mentioned?

Happy to help. Apologies as I mistyped his name. He is launching a new facility in FL soon with their new laws that will allow him to do his work there. But he has a clinic in Canada as well.

Dr. Adeel Khan: Stem Cell Therapy Specialist - Eterna Health

Dr. Adeel Khan MD and the Eterna Health team specialize in stem cell therapy. Our personalized treatment plans can improve your pain and function.

eterna.health

 

[FrancisK]

Happy to help. Apologies as I mistyped his name. He is launching a new facility in FL soon with their new laws that will allow him to do his work there. But he has a clinic in Canada as well.

Dr. Adeel Khan: Stem Cell Therapy Specialist - Eterna Health

Dr. Adeel Khan MD and the Eterna Health team specialize in stem cell therapy. Our personalized treatment plans can improve your pain and function.

eterna.health

Thank you brother I sincerely appreciate it