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163 total results

Comments (152)

Becky, I have seen 5 neurologist in both private to large hospital settings . I go...

https://connect.mayoclinic.org/comment/615189/

not supported by neuro ultrasound Cmt

Discussion: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Support Group: Autoimmune Diseases

Posted: Jul 9, 2021

I was diagnosed with chronic Sensorimotor Axonal Polyneuropathy three years ago at Weill Cornell. My three...

https://connect.mayoclinic.org/comment/850198/

genetic test came back and I have CMT2 ... and CMT4B. ... Daughter 1 has no CMT mutations. ... Daughter 2 has the CMT2 mutation. ... Daughter 3 has both the CMT2 and CMT4B

Discussion: Hopeless and Discouraged, again! Seeking any advice.

Support Group: Neuropathy

Posted: Apr 27, 2023

Hi @rivermaya34. So sorry to hear you have been diagnosed with HNPP. This is such a...

https://connect.mayoclinic.org/comment/1070799/

can get the medication list from the CMT ... inherited neuropathies) and HNPP/CMT ... Join the facebook group for HNPP and CMT ... of information out there about HNPP/CMT ... We do fall under CMT1 that's why

Discussion: Chronic lymphocytic leukemia and Hereditary Nerve Pressure Palsy

Support Group: Blood Cancers & Disorders

Posted: May 19, 2024

Invitae.com does hereditary testing. My nieces's best buddy is a genetic counselor's and she uses them...

https://connect.mayoclinic.org/comment/829661/

CMT (Charcot Marie Tooth) is what my

Discussion: Does anyone recommend a portable, rechargable TENS unit for pain?

Support Group: Neuropathy

Posted: Mar 21, 2023

I'm trying an anti-inflammatory diet as well. No caffeine, lots of vegies, lean grass-fed meat, fish,...

https://connect.mayoclinic.org/comment/825077/

My neuropathy/CMT seems to be caused

Discussion: Eliminating Foods for Neuropathy pain

Support Group: Neuropathy

Posted: Mar 12, 2023

Because of illness and moving it has been a while since I have been on this...

https://connect.mayoclinic.org/comment/784900/

but also possible Lyme Disease or CMT

Discussion: Immunotherapy - Keytruda for colorectal cancer

Support Group: Colorectal Cancer

Posted: Dec 14, 2022

I grew up with CMT because my grandmother, mother, uncles, and older brothers suffered from this...

https://connect.mayoclinic.org/comment/1134193/

I grew up with CMT because my grandmother

Discussion: Chronic Sensorimotor Axonal Polyneuropathy and CMTuagnised with Chroni

Support Group: Neuropathy

Posted: Aug 31, 2024

@decrepit - Believe me, I wasn't happy with the doctor who said that to me...what's the...

https://connect.mayoclinic.org/comment/818891/

your post, and I too was checked for CMT

Discussion: Anyone here dealing with peripheral neuropathy?

Support Group: Neuropathy

Posted: Feb 28, 2023

I was diagnosed with MGUSand CMT (Charcot-Marie-Tooth Disease), which is a rare peripheral neuropathy in 2022...

https://connect.mayoclinic.org/comment/1245363/

I was diagnosed with MGUSand CMT (Charcot-Marie-Tooth

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Feb 25 2:34pm

When my PN started 6 years ago, heat and cold intolerance happened many times a day,...

https://connect.mayoclinic.org/comment/785728/

ever been or should be tested for CMT

Discussion: Anyone Heard of Pirenzepine for Small Fiber Neuropathy?

Support Group: Neuropathy

Posted: Dec 17, 2022

I had some success with Sanexas Treatments. I'm certain that my experience is different than most,...

https://connect.mayoclinic.org/comment/808994/

hereditary peripheral neuropathy like CMT ... 35 kinds of neuropathy, including CMT

Discussion: Living with Neuropathy - Welcome to the group

Support Group: Neuropathy

Posted: Feb 9, 2023

Thanks for your reply @elained . My neurologist diagnosed mine as moderate to severe, but provided...

https://connect.mayoclinic.org/comment/247984/

related to Charcot-Marie-Tooth disorder (CMT

Discussion: Just diagnosed....continue testing for causes

Support Group: Neuropathy

Posted: Feb 20, 2019

I am new to this site- I was officially dx with Igm-CIDP/MGUS July 2019 by Mayo...

https://connect.mayoclinic.org/comment/238724/

I was first dx with CMT/CIDP after starting

Discussion: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Support Group: Autoimmune Diseases

Posted: Oct 23, 2020

I have the same neuropathy issues as you. Numbness in my feet, especially my toes. Can't...

https://connect.mayoclinic.org/comment/311046/

The doctor suspects CMT or HSN but also

Discussion: Neuropathy in feet and limited toe movement?

Support Group: Neuropathy

Posted: Jul 25, 2020

Hi, I have been reading your comments above. I too have swelling of the hand(s). It...

https://connect.mayoclinic.org/comment/290959/

mentioned that she specialized in CMT

Discussion: Extreme Swelling in the Hand

Support Group: Bones, Joints & Muscles

Posted: Feb 3, 2020

If you stop Prolia, there is a quick drop in bone density and high risk of...

https://connect.mayoclinic.org/comment/713464/

@CMT I would ask for Tymlos or Evenity

Discussion: Prolia treatment for osteoporosis: What is your experience?

Support Group: Osteoporosis & Bone Health

Posted: Jun 2, 2022

There are so many kinds of neuropathy that I'm not sure there is a one size...

https://connect.mayoclinic.org/comment/839614/

They guessed CMT, but it was HNPP (Hereditary

Discussion: Idiopathic Small Fiber Neuropathy Research

Support Group: Neuropathy

Posted: Apr 7, 2023

I have an appointment at Weil Cornell in Manhattan with a Medical Geneticist on October 26th...

https://connect.mayoclinic.org/comment/324715/

I have had CMT4B for many years as well ... The CMT thing runs in my family big

Discussion: Small Fiber Neuropathy and genetic testing?

Support Group: Neuropathy

Posted: Oct 12, 2020

Hi John, Thanks for your response. I did find the SMA Foundation website. I actually called...

https://connect.mayoclinic.org/comment/317876/

The CMT thing is tolerable because I

Discussion: Is it worth trying to resolve peripheral neuropathy?

Support Group: Neuropathy

Posted: Aug 24, 2020

I truly feel for you because I went through the same thing when I was 13...

https://connect.mayoclinic.org/comment/1039877/

Palsy (also falls into the category of CMT1A ... Palsy or Charot Marie Tooth Disease (CMT

Discussion: Don't know what to do anymore

Support Group: Chronic Pain

Posted: Mar 25, 2024