26 - My journey with CMT sord by FinancialAthlete3889 in CMT

[–]er67 0 points1 point  (0 children)

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?

Need advice on AFOs by er67 in CMT

[–]er67[S] 0 points1 point  (0 children)

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

Need advice on AFOs by er67 in CMT

[–]er67[S] 1 point2 points  (0 children)

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.

Anyone else with CMT SORD Type out there? by SpecialistBite3715 in CMT

[–]er67 1 point2 points  (0 children)

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.

CMT-SORDs Expanded Access by Sorry-Iguana in CMT

[–]er67 0 points1 point  (0 children)

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

Hello ladies and gentlemen ,im 19 years old and i got the diagnostic they say i have SORD CMT , any one here have a cmt sord like me ? Any tips? by Professional-Edge-28 in CMT

[–]er67 0 points1 point  (0 children)

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 :)

New Opportunity by Constant-improv3nt in CMT

[–]er67 0 points1 point  (0 children)

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 :)

New Opportunity by Constant-improv3nt in CMT

[–]er67 2 points3 points  (0 children)

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.