ALS4/Charcot Marie Tooth from SETX GENE mutation

[JTS]

Hello again, everyone. Just checking back in to see if anyone out there can discuss these topics from experience. I'm ready and willing to share and learn. Thanks

 

[lgelb]

It appears that you have a CMT disorder, which does not fall under our scope. So that's probably why you are not seeing responses.

I would check out the CMT section on the Hereditary Neuropathy Foundation, which has a lot of good resources. Same for the CMT Association. There is also a CMT Forum on Facebook and another one on the Inspire web site that you can join.

All the best.

 

[JTS]

I am recently diagnosed with ALS4.
I am learning more a bit lately but still minimal. Is anyone out there able to discuss this further from personal experience?
Tha k you

 

[lgelb]

Please refer to the post above with CMT resources. I mentioned the CMT section on the Hereditary Neuropathy Foundation, the CMT Association web site, the CMT Forum on Facebook and the CMT forum on the Inspire web site.

That is all we can do here. Since this forum does not cover CMT, we cannot respond from experience.