5 ms·

This makes me very excited. I have Spinal Muscular Atrophy type 2 [1] and I have lost most of my physical capabilities save for 2-3 fingers and of course speech

by ofek 3y ago

This makes me very excited. I have Spinal Muscular Atrophy type 2 [1] and I have lost most of my physical capabilities save for 2-3 fingers and of course speech. Although I am now on Nusinersen [2] treatments I am still becoming weaker over time, albeit extremely slowly. One day I would love to use this device because for some reason my tongue has not experienced any degradation in all of my life so it would be nice to know I have a fallback, should I need one. Note that specialists are saying that another promising drug from Scholar Rock [3] would probably prevent any further weakening if used in conjunction with my current treatment. Unfortunately, the FDA takes a long time to approve new medications and I have heard this one is particularly special because there is potential for abuse by athletes. [1]: https://en.wikipedia.org/wiki/Spinal_muscular_atrophy https://en.wikipedia.org/wiki/Spinal_muscular_atrophy [2]: https://en.wikipedia.org/wiki/Nusinersen https://en.wikipedia.org/wiki/Nusinersen [3]: https://scholarrock.com/our-pipeline/spinal-muscular-atrophy/ https://scholarrock.com/our-pipeline/spinal-muscular-atrophy...

aszantu 3y ago
Might I ask about your diet?
NoPedantsThanks 3y ago
I hope it works out for you!
cebert 3y ago
Thanks for sharing more information on spinal muscular atrophy. I’m sorry you have to deal with this and hope a cure is found. I’m inspired by people like you who have to overcome challenges like yours.
cjbgkagh 3y ago
Ever thought about going to the grey/black market? If the athletes can get it why can’t you? I could understand the reasons why you may not want to. I have chronic fatigue and if it wasn’t for black market medications I would still be stuck in bed until I ran out of money by which time the only state help I could expect is assisted suicide - which made the choice for me. Myostatin inhibitors peptides like follistatin 344 are pretty pedestrian compared some of the stuff I’m on. I would die long before the meds I’m on would get FDA approval.
- tticvs 3y ago
  Quite curious what research chemicals you've used against chronic fatigue (I thankfully don't have it or need medication)
  - cjbgkagh 3y ago
    The ipa/modGRF/Frag/BPC157/TB500 stack is pretty common and does help. T3 and Test can help but are not research peptides. Then there are the Khavinson signaling peptides which are coded in human DNA and known bioactive, but can be a bit dangerous. Not for the faint of heart. Most of the benefit I have gained is from psychopharmacology which is near impossible to get scripts for so I get gray market supply instead; low dose naltrexone, low dose modafinil (better than low dose abilify in my opinion), and amitriptyline. It’s not just what you take it’s also how you take them. To avoid dysautonomia you have to intentionally swing between sympathetic and parasympathetic states. I think there is a subclinical insulin resistance so meds like metformin and semaglutide (ozempic) at really low doses can help. TUDCA is good but over the counter. Im mostly back to normal but still get rough patches on occasion. As someone who is vax injured I’m interested in ACE-2 ligands which are supposed to help reverse the damage done by the spike protein. I’m also interested in off label use of copaxone. It’s massively complex and many people with this are readily willing to take deadly risks in trying new things so underground patient groups are far ahead of the doctors. We’ve already done bigger trials of some ‘promising’ new meds and already know they don’t work. It’ll take medical science many decades to find out the same thing. I have hEDS by way of multiple TNXB variants which have specific personality side effects (like Sheldon Cooper from Big Bang Theory) so it’s pretty easy to find other people with it as we almost always get ME/CFS and we react differently to specific medications - for some there is a resistance to anesthetics. I think in time the brain/gut axis with microbiota biome/virome being important. So diet and a phage cocktail could help as well as a targeted antibody neutralizing small molecules to fix specific autoimmunity problems. These are whole categories of potential medicines which are largely ignored my mainstream medical science.
- fragmede 3y ago
  Dallas Buyers Club vibes
ta988 3y ago
Have you registered on the mouthpad website? they may get you one.
notatoad 3y ago
i love when my first reaction to a headline is "why on earth would anybody want that" and then the first comment completely answers that question.

by ofek 3y ago

aszantu 3y ago

Might I ask about your diet?

NoPedantsThanks 3y ago

I hope it works out for you!

cebert 3y ago

Thanks for sharing more information on spinal muscular atrophy. I’m sorry you have to deal with this and hope a cure is found. I’m inspired by people like you who have to overcome challenges like yours.

cjbgkagh 3y ago

Ever thought about going to the grey/black market? If the athletes can get it why can’t you? I could understand the reasons why you may not want to. I have chronic fatigue and if it wasn’t for black market medications I would still be stuck in bed until I ran out of money by which time the only state help I could expect is assisted suicide - which made the choice for me. Myostatin inhibitors peptides like follistatin 344 are pretty pedestrian compared some of the stuff I’m on. I would die long before the meds I’m on would get FDA approval.

tticvs 3y ago
Quite curious what research chemicals you've used against chronic fatigue (I thankfully don't have it or need medication)
- cjbgkagh 3y ago
  The ipa/modGRF/Frag/BPC157/TB500 stack is pretty common and does help. T3 and Test can help but are not research peptides. Then there are the Khavinson signaling peptides which are coded in human DNA and known bioactive, but can be a bit dangerous. Not for the faint of heart. Most of the benefit I have gained is from psychopharmacology which is near impossible to get scripts for so I get gray market supply instead; low dose naltrexone, low dose modafinil (better than low dose abilify in my opinion), and amitriptyline. It’s not just what you take it’s also how you take them. To avoid dysautonomia you have to intentionally swing between sympathetic and parasympathetic states. I think there is a subclinical insulin resistance so meds like metformin and semaglutide (ozempic) at really low doses can help. TUDCA is good but over the counter. Im mostly back to normal but still get rough patches on occasion. As someone who is vax injured I’m interested in ACE-2 ligands which are supposed to help reverse the damage done by the spike protein. I’m also interested in off label use of copaxone. It’s massively complex and many people with this are readily willing to take deadly risks in trying new things so underground patient groups are far ahead of the doctors. We’ve already done bigger trials of some ‘promising’ new meds and already know they don’t work. It’ll take medical science many decades to find out the same thing. I have hEDS by way of multiple TNXB variants which have specific personality side effects (like Sheldon Cooper from Big Bang Theory) so it’s pretty easy to find other people with it as we almost always get ME/CFS and we react differently to specific medications - for some there is a resistance to anesthetics. I think in time the brain/gut axis with microbiota biome/virome being important. So diet and a phage cocktail could help as well as a targeted antibody neutralizing small molecules to fix specific autoimmunity problems. These are whole categories of potential medicines which are largely ignored my mainstream medical science.
fragmede 3y ago
Dallas Buyers Club vibes

ta988 3y ago

Have you registered on the mouthpad website? they may get you one.

notatoad 3y ago

i love when my first reaction to a headline is "why on earth would anybody want that" and then the first comment completely answers that question.