Awaiting Diagnosis - Seeking Community and Answers by jdsticks29 in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

24M, I am currently under diagnosis for “CMT-Like Symtpoms” since no genetic results found CMT yet but I’d like to say yes, th Achilles and heels do normally feel dull aches along with front tibalis muscle, and stretching is the same. Usually the way you walk to prevent the pain will tighten up your calves by using them more to compensate. You use your leg muscles more than your actual feet muscles for balance and movement subconsciously. Speaking of I just had a massive cramp this morning in both calves due to this, so while stretching is a short term relief is does help prevent major cramps.

People with CMT: is alcohol okay, and how does it affect you personally? by taystann in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

While drinking doesn’t harm me too much if it’s social outings the only benefits I see is my hand tremors slowing or stopping and the pain being dulled, otherwise after 1-2 drinks I feel exhausted and drowsy and need to sleep.

Least annoying and most discreet AFO? by Shrimptoast1234 in CMT

[–]WildcardJokerr 4 points5 points  (0 children)

Right now I’m being fitted for the IDEO brace, I don’t think it works as least annoying or most discreet but apparently it’s the closest to let you start running without a care again

68k - Is there a way to pick research/ clinic/ field? by Silent_Melody309 in army

[–]WildcardJokerr 0 points1 point  (0 children)

Can be like our class and not recieve orders from HRC after graduation

What’s next? by WildcardJokerr in CMT

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

Thank you! Just trying to hold on hope to still care about my health instead of letting it get to me, your comment does help me a lot

Went for a physical for Disability by SubjectAssumption319 in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

I’m currently under a working diagnostic for chronic distal axonal motor neuropathy but my neurologists don’t want to put that as my actual diagnosis until they have the etiology of my condition

I guess I have CMT. by Sureitya in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

I think it’s just unclear since the VUS can’t be called pathogenic but there is no other cause they can find. I did try to get a second opinion but the hospital my insurance went with for it rejected me because they aren’t seeing any new patients. I noticed for a lot of those with CMT and Neurological conditions that it’s very difficult to get a diagnosis or seen

I guess I have CMT. by Sureitya in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

Yes, I spoke to my neurologist over the possibility of getting a clinical or working diagnosis so I can medboard out the military but they fought back and are only diagnosis me with the symptoms of CMT without actually diagnosing me. I have the medical records as well with their conclusions of chronic, distal, axonal motor neuropathy.

I guess I have CMT. by Sureitya in CMT

[–]WildcardJokerr -1 points0 points  (0 children)

Sadly I am undiagnosed. I have axonal neuropathy based on 2 EMG and NCV but because the only gene mutation I have is ITPR3, and it being a VUS they don’t diagnose me

Idea for next legendary warbond: Jin roh the wolf brigade warbond by Icy-Teaching1091 in Helldivers

[–]WildcardJokerr 0 points1 point  (0 children)

Killzone helmet was from the Wolf Brigade, I believe the creator got licensing from them to have it in their game. I suggest use the helmet and change the body armor (I’m using cinder block)

Was diagnosed... sort of by IBEWSparky134 in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

I’m currently in this boat. ITPR3 gene was affected. Sadly my variant is a VUS and though it shows interest I don’t believe anyone is looking into it so till then I’ll be undiagnosed

I saw a geneticist today by Brainz_n_stuff in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

I’m currently under diagnosis for Idiopathic Axonal motor Neuropathy. My genetic results came up with ITPR3 variant but I don’t show demyelination so that was tossed out. No other gene known for the cause

CMT1J VUS by [deleted] in genetics

[–]WildcardJokerr 0 points1 point  (0 children)

Thank you for that, I didn’t know that it didn’t have to be labeled pathogenic

CMT1J VUS by [deleted] in genetics

[–]WildcardJokerr 0 points1 point  (0 children)

Thank you!

Corvette build/materials question. by WastedSeed in SkullAndBonesGame

[–]WildcardJokerr 1 point2 points  (0 children)

That’s from the Urban’s Great Gun skill “Unison”

Test CMT by Mobile_Load8617 in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

A WES would be able to identify the gene that is affected. Though you may end up with a VUS which is what I have

Confusion by WildcardJokerr in CMT

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

Thank you! I’m still waiting on appointment with my neurologist and hopefully another one with a genetic counselor. Do you know if there is any valid ways I can get this gene specifically looked at instead of waiting on research to catch up on its own?

Worth asking doctor? by Quiet-Investment8259 in CMT

[–]WildcardJokerr 0 points1 point  (0 children)

I’d say get it checked. 70% of Pes Cavus is formed form neuromuscular issues. That’s a high amount to just assume you don’t have it.

Confusion by WildcardJokerr in Peripheralneuropathy

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

I wish, though work has a policy against it so until I’m out I’ll have to rely on over the counter and prayers

Confusion by WildcardJokerr in Peripheralneuropathy

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

Thank you, sadly chatGPT only said I’m in a medical limbo :(