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162 total results

Comments (151)

Ed - Interesting. My Dad was questionable. He developed severe dementia in his early 60’s. One...

https://connect.mayoclinic.org/comment/1019471/

$150 for the testing that is not for CMT

Discussion: PN: From Anger to Acceptance

Support Group: Neuropathy

Posted: Feb 20, 2024

My mothers family has a five generation history of CMT. I developed those PN symptoms when...

https://connect.mayoclinic.org/comment/886477/

family has a five generation history of CMT ... Sensorimotor Axonal Polyneuropathy, CMT2 ... , CMT4B, and I’m a SMA carrier (entire ... Daughter two has CMT2. ... Daughter three has both CMT2 and CMT4B

Discussion: Neuropathy in hands, feet, and face that came on quickly

Support Group: Neuropathy

Posted: Jun 28, 2023

@jula73, Jula .. I am assuming that is your first name .. PLEASE correct me if...

https://connect.mayoclinic.org/comment/62366/

and a neuromuscular disease called CMT ... which can be one of the symptoms of CMT

Discussion: (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Support Group: MAC & Bronchiectasis

Posted: Jul 7, 2017

Neuro issues are frustrating and scary but it could be so many things including something non-life...

https://connect.mayoclinic.org/comment/1093909/

had genetic testing for suspected CMT

Discussion: Having ALS-like symptoms and can't get a neurologist referral

Support Group: Brain & Nervous System

Posted: Jun 25, 2024

Hi Sheila, One possibility that could explain peripheral neuropathy in legs/feet and eyes could be a...

https://connect.mayoclinic.org/comment/844763/

, this is the most common cause of CMT

Discussion: Nerve damage and pain that isn’t neuropathy but feels like it.

Support Group: Neuropathy

Posted: Apr 17, 2023

There are others besides Winsantor in phase 2+ trials for drugs that stimulate peripheral nerve growth....

https://connect.mayoclinic.org/comment/335223/

HIV, diabetes and even some types of CMT

Discussion: Has anyone used MLS Laser therapy or Calmare Therapy?

Support Group: Neuropathy

Posted: Feb 27, 2021

My neurologist thought I had erythromelalgia until I pointed out that my SCN9A gene is normal....

https://connect.mayoclinic.org/comment/1113474/

any known Charcot-Marie-Syndrome (CMT

Discussion: Idiopathic Neuropathy started with Erythromelalgia

Support Group: Neuropathy

Posted: Jul 28, 2024

Ray - I get you. Over my first 6 years ( different doctors, 2 medical university...

https://connect.mayoclinic.org/comment/967626/

explained why he didn’t believe it was CMT

Discussion: PN and Tamsulosin (Flomax)

Support Group: Neuropathy

Posted: Nov 19, 2023

Good morning - I did wonder about my big toe as well, but my surgeon said...

https://connect.mayoclinic.org/comment/1022054/

other company could have tested for CMT

Discussion: Hammertoe Surgery and Neuropathy

Support Group: Neuropathy

Posted: Feb 25, 2024

Good morning, I’m a 54 year old female and had a double knee replacement a year...

https://connect.mayoclinic.org/comment/100479/

Icing was invaluable as well as a CMT

Discussion: Having knee replacement: how to prepare and questions about PT

Support Group: Joint Replacements

Posted: Jan 13, 2019

HNPP - I have HNPP as well. I'm 64 and it first started with numbness at...

https://connect.mayoclinic.org/comment/834743/

neuro issues and they thought he had CMT

Discussion: Stiff Person Syndrome: Want to connect with others

Support Group: Brain & Nervous System

Posted: Mar 30, 2023

@ronoejello1, @SusanEllen66 - I would be interested to hear how your appointment went with Dr. David...

https://connect.mayoclinic.org/comment/921906/

trialbulletin.com/lib/entry/ct-02260388 • CMT ... /PMC4392824/ • PXT-3003 Study for CMT1A

Discussion: Living with Neuropathy - Welcome to the group

Support Group: Neuropathy

Posted: Aug 31, 2023

Hello @johnhans, welcome to Mayo Connect and thank you for your question. I also have small...

https://connect.mayoclinic.org/comment/91644/

trialbulletin.com/lib/entry/ct-02260388 - CMT ... PMC4392824/ - PXT-3003 Study for CMT1A

Discussion: Anyone here dealing with peripheral neuropathy?

Support Group: Neuropathy

Posted: Oct 15, 2016

In 2008, I started with episodes of feeling like passing out. Then symptoms went away. Month...

https://connect.mayoclinic.org/comment/238727/

but said I have a dual diagnosis of CMT

Discussion: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Support Group: Autoimmune Diseases

Posted: Oct 24, 2020

@j77 How very frustrating and scary for you. MG was the first thing that came to...

https://connect.mayoclinic.org/comment/1034943/

neuropathy I have that falls under the CMT

Discussion: ALS starting in the trunk of the body

Support Group: Neuropathy

Posted: Mar 17, 2024

I too suffered for years not knowing what was wrong. Similar symptoms and every neurologist said...

https://connect.mayoclinic.org/comment/1061471/

Neuropathies) and the genetic counselor for CMT

Discussion: MS? Fibro? - Still no diagnosis. Anyone else in similar situation?

Support Group: Brain & Nervous System

Posted: May 3, 2024

Sorry my response took a long time. Not only am I suffering from Chronic Sensorimotor Axsonal...

https://connect.mayoclinic.org/comment/1241264/

from Chronic Sensorimotor Axsonal PN, CMT2 ... , and CMT4B but I've had MDS/MPN

Discussion: Chronic Sensorimotor Axonal Polyneuropathy and CMTuagnised with Chroni

Support Group: Neuropathy

Posted: Feb 20 8:17am

I am making some headway in determining the cause of my CMT2. My local neurologist ordered...

https://connect.mayoclinic.org/comment/867728/

headway in determining the cause of my CMT2

Discussion: Any recommendations for a neurologist at Mayo in Rochester MN

Support Group: Neuropathy

Posted: May 27, 2023

Thanks for providing this information. It is a little difficult to wade through for someone without...

https://connect.mayoclinic.org/comment/673595/

I am assuming I have CMT2I.

Discussion: CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD

Support Group: Neuropathy

Posted: Jan 21, 2022

I have Chronic and Severe Sensorimotor Axonal Polyneuropathy plus CMT2 and CMT4B. These are incurable and...

https://connect.mayoclinic.org/comment/1121579/

Sensorimotor Axonal Polyneuropathy plus CMT2 ... and CMT4B.

Discussion: Slowing the progression of PN

Support Group: Neuropathy

Posted: Aug 11, 2024