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468 total results

Comments (398)

@dabbs Welcome to Connect. I am a spine patient too with a fusion of C5/C6. You...

https://connect.mayoclinic.org/comment/817607/

connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability

Discussion: Cervical Neck Instability

Support Group: Spine Health

Posted: Feb 26, 2023

This is a WONDERFUL example of a process that can keep pain lowered which may be...

https://connect.mayoclinic.org/comment/1122218/

If you have EHLERS DANLOS Hypermobility

Discussion: Fibromyalgia - Does anything help relieve severe pain during flares?

Support Group: Fibromyalgia

Posted: Aug 12 11:08am

I really appreciate you giving me these details. Will be seeing the neurologist PA on Thursday...

https://connect.mayoclinic.org/comment/1146826/

I have Ehlers-Danlos Syndrome and have

Discussion: Gabapentin dosing

Support Group: Neuropathy

Posted: Sep 24 5:54pm

Hello @blossom2016, Welcome to Connect, and thank you so much for sharing information as I'm sure...

https://connect.mayoclinic.org/comment/114597/

to a few members who have discussed Ehlers-Danlos

Discussion: Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

Support Group: Autoimmune Diseases

Posted: Dec 28, 2016

I wouldn't go to the Cleveland Clinic. I went there and they screw all my appointments...

https://connect.mayoclinic.org/comment/702712/

I went for ehlers-danlos and they didn

Discussion: Any experience with Residential Chronic Pain Treatment Programs?

Support Group: Chronic Pain

Posted: Apr 26, 2022

Thanks! This is really helpful! I searched for keywords like SCN9A and SCN10A but didn't find...

https://connect.mayoclinic.org/comment/324706/

before where we discussed testing for Ehlers-Danlos ... research has shown correlations between Ehlers-Danlos

Discussion: Small Fiber Neuropathy and genetic testing?

Support Group: Neuropathy

Posted: Oct 9, 2020

My doctor has referred me again to rheumatologist because the last referral did not work. I...

https://connect.mayoclinic.org/comment/863802/

genetic testing to see if it might be Ehlers

Discussion: ANA positive then negative then positive...

Support Group: Autoimmune Diseases

Posted: May 21, 2023

Mayo Clinic in Jacksonville, Florida has an EDS specialty clinic! My daughter just set up her...

https://connect.mayoclinic.org/comment/1079534/

information, call 904-953-0869 or the Ehlers-Danlos

Discussion: Ehlers Danlos Syndrome, MCAS, POTS, and MALS

Support Group: Bones, Joints & Muscles

Posted: Jun 2 12:58pm

Thank you! I will look into that. I also happened upon an article about Ehlers Danlos...

https://connect.mayoclinic.org/comment/775937/

also happened upon an article about Ehlers

Discussion: ANA positive then negative then positive...

Support Group: Autoimmune Diseases

Posted: Nov 21, 2022

Nice to get to know about about you Lisa, and your family history with scoliosis. Who...

https://connect.mayoclinic.org/comment/82577/

up-to-date on the research related to Ehlers

Discussion: Adults living with scoliosis, thoracic stenosis

Support Group: Spine Health

Posted: Jul 31, 2016

I have Ehlers Danlos Syndrome and it is a collagen deficiency of all tissue but has...

https://connect.mayoclinic.org/comment/797509/

I have Ehlers Danlos Syndrome and it

Discussion: How do you cope with Mixed Connective Tissue Disease?

Support Group: Autoimmune Diseases

Posted: Jan 16, 2023

@karen31 Karen, I have also been dX with EDS by a couple (actually 3) doctors. But...

https://connect.mayoclinic.org/comment/597080/

go to : https://www.omim.org/entry/Ehlers-Danlos

Discussion: Ehlers Danlos Syndrome: Can't get diagnosed

Support Group: Chronic Pain

Posted: Apr 25, 2021

It would be a positive thing to have confirmation of the diagnosis, but if you’re still...

https://connect.mayoclinic.org/comment/1079440/

Syndrome) or hypermobility, such has Ehlers

Discussion: Mitral valve prolapse

Support Group: Heart & Blood Health

Posted: Jun 2 10:45am

I have had neuropathy all of my 51 years due to Ehlers Danlos, but I never...

https://connect.mayoclinic.org/comment/1121078/

neuropathy all of my 51 years due to Ehlers

Discussion: Menopause and Neurapothy

Support Group: Neuropathy

Posted: Aug 10 9:53am

Hello @babyur4me, Since symptoms of some other disorders related to Erythema Multiforme can be quite similar,...

https://connect.mayoclinic.org/comment/218267/

well: – Chronic Erythema Nodosum & Ehlers-Danlos

Discussion: Help on treatment for Erythema Multiforme Major

Support Group: Autoimmune Diseases

Posted: Nov 5, 2018

I was diagnosed with Idiopathic Axonal sensorimotor polyneuropathy 4-1/2 years ago. My doctor offered no treatment...

https://connect.mayoclinic.org/comment/922092/

embolism (this past Jan), and possibly Ehlers

Discussion: Questions on IVIg treatment for what I have: Axonal sensory-motor

Support Group: Neuropathy

Posted: Aug 31, 2023

Welcome to Connect, @dulce355 Both you and your sister have von Willebrands Disease which is a...

https://connect.mayoclinic.org/comment/977594/

down from mom or dad, along with the Ehlers

Discussion: Anyone have experience with HHT or Osler-Weber Rendu?

Support Group: Blood Cancers & Disorders

Posted: Dec 9, 2023

Hi Kate, and welcome to Mayo Clinic Connect. You ask some amazing questions. Some of them,...

https://connect.mayoclinic.org/comment/272502/

kariulrich @blossom2016, talking about Ehlers-Danlos ... : - Chronic Erythema Nodosum & Ehlers-Danlos ... chronic-erythema-nodosum/ - Possible Ehlers-Danlos ... connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability

Discussion: What to expect at Mayo Clinic, Rochester

Support Group: Visiting Mayo Clinic

Posted: Aug 19, 2019

I would definitely find another neurosurgeon to go over your scans, xrays, before and after your...

https://connect.mayoclinic.org/comment/1079340/

that they had some issues and have Ehlers

Discussion: MCTD (Mixed Connective Tissue Disease)

Support Group: Autoimmune Diseases

Posted: Jun 2 8:09am

Hi - I have hEDS that shares comorbidities with Mast Cell Activation Syndrome (MCAS) and POTS...

https://connect.mayoclinic.org/comment/717948/

until I received my diagnosis from the Ehlers ... you to either go on YouTube or the Ehlers