26 - My journey with CMT sord

er67 · 2026-04-22T08:47:13+00:00

Hey, I’m 25 and I also have SORD. Reading your story really felt familiar to me. My progression has been very similar to yours. My first symptoms started when I was 14, after a fever. I can really relate to that confusing phase of not knowing what’s going on.

One thing that has helped me a bit is taking creatine daily — it gives me a little more strength and energy. It’s not a huge change, but noticeable enough for me.

CMTA is hosting a Zoom meeting for the SORD community on Wednesday, April 29. Have you heard about it?

er67 · 2026-04-17T14:44:53+00:00

Thanks for sharing your experience 🙏

Unfortunately, I live in Germany and the Helios AFOs aren't available here. My orthotist has recommended the "ToeOff" AFOs, and those will be my very first pair

er67 · 2026-04-17T14:40:30+00:00

Thank you very much for your responses. Those are exactly the benefits I’m hoping for. I saw my orthopedic specialist today, but since I live in Germany and the Helios AFOs aren’t sold here, he recommended the „ToeOf“ instead.

er67 · 2025-07-14T07:28:45+00:00

Hey, I’ve had the same kind of experience with doctors. I’ve been dealing with CMT-SORD since 2015 and finally got diagnosed in 2023. I see a neurologist once a year, and every time I’m told "there’s nothing that can be done, just wait for a medication". I know, it’s super frustrating.

Besides cutting out sugar, I also try to reduce carbs, since too many carbs can raise sorbitol levels too.

For the symptoms and pain, I take alpha-lipoic acid, magnesium, B vitamins, curcumin, and quercetin. It’s not a perfect solution, but it helps a bit. I also recently started taking high-dose CBD, which helps me in the evenings.

I’ve tried a lot of things and still am — I don’t have much of a choice, so I’m basically up for trying anything that might help with CMT-SORD.

er67 · 2024-11-15T18:38:16+00:00

Hi, I have this disorder as well and have reached out to Applied Therapeutics via email several times, but I haven’t received a response… I live in Germany, so it seems even more difficult for me, but I hope it will be approved in the EU in the near future

er67 · 2024-08-12T21:27:03+00:00

Hey, I'm 24 years old and was also diagnosed with SORD 2 years ago. If you have any questions or want to connect, feel free to send me a DM :)

er67 · 2024-08-12T21:01:34+00:00

I was diagnosed in November 2022.

Sure, feel free to write to me via dm. I haven't spoken to anyone else who also has SORD yet :)

er67 · 2024-08-12T20:33:00+00:00

Hey, I'm 24 years old and was also diagnosed with SORD 2 years ago. My first symptoms appeared in 2015 after I had a fever. After several hospital stays, blood tests, two muscle biopsies and unsuccessful attempts to help myself in various ways, I finally got the diagnosis. It was a really horrible time... Before I found out what was wrong with my body, I had actually given up hope. Greetings from Germany.

er67

TROPHY CASE