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Comments (749)

You have such a great outlook @jaymaysea. I know this must be difficult for you not...

https://connect.mayoclinic.org/comment/939974/

part and she now is diagnosed with amyloidosis

Discussion: Anyone take new drug Camzyos (mavacamten) for HCM?

Support Group: Hypertrophic Cardiomyopathy (HCM)

Posted: Oct 1, 2023

Hi, Cheryl. I am oldkarl. I do not know if you are in the right group...

https://connect.mayoclinic.org/comment/95533/

to come to the top is some form of Amyloidosis ... (see https://amyloidosis.org) It is ... Educate yourself with amyloidosis.org

Discussion: Chronic Pain members - Welcome, please introduce yourself

Support Group: Chronic Pain

Posted: Jun 28, 2017

@njcarolnjn and @david33 I am convinced to two things with the stuff you struggle with. First,...

https://connect.mayoclinic.org/comment/72295/

I know now it was some form of Amyloidosis

Discussion: Brachioradial pruritus. (severe itching on forearms and neck, no rash).

Support Group: Skin Health

Posted: Dec 31, 2017

I did not have a good experience with Mayo on this last visit. I did not...

https://connect.mayoclinic.org/comment/106453/

serious disease (Serum Free Lite Chain Amyloidosis

Discussion: Experience with Mayo Clinic in FL?

Support Group: Spine Health

Posted: Sep 21, 2016

@jewel8888, Julie, I don't know a thing about amyloidosis .. only about our disease. But if...

https://connect.mayoclinic.org/comment/59714/

Julie, I don't know a thing about amyloidosis

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

Support Group: MAC & Bronchiectasis

Posted: Jan 11, 2017

@hopeful33250 Thanks for the compliment Teresa. Sure, share it. AND I am just realizing another coping...

https://connect.mayoclinic.org/comment/609587/

and read my Email, and write in my Amyloidosis

Discussion: Sjogren’s Syndrome – Introduce yourself and meet others

Support Group: Autoimmune Diseases

Posted: Jun 17, 2021

Welcome to Connect @jstpeachey! I know I shouldn’t but I just have to use your @name...

https://connect.mayoclinic.org/comment/889456/

countrygirlusa had an auto transplant for AL Amyloidosis

Discussion: One-week pre Autogolous BMT: I'm afraid I'm not prepared

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Jul 3, 2023

@ab123 Sorry, Ab, I am so slow about replying to your note of Jun 03. I...

https://connect.mayoclinic.org/comment/152821/

because of some other stuff as well (AL Amyloidosis

Discussion: Difficulty while starting urination age 23

Support Group: Kidney & Bladder

Posted: Sep 26, 2017

Sorry to hear you’ve lost relatives to cancer. Cancer runs in my family also, however it’s...

https://connect.mayoclinic.org/comment/929260/

there’s risks of other problems (eg amyloidosis

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Sep 13, 2023

Yes, it’s incredibly tricky trying to avoid environmental contaminants, and there’s also individual susceptibility (so my...

https://connect.mayoclinic.org/comment/961363/

the new haematologist thinks I have amyloidosis

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2023

I also have MGUS which was discovered in lab work few years ago by accident. I...

https://connect.mayoclinic.org/comment/943307/

I’ve been tested for MS, Amyloidosis

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Oct 6, 2023

Hi, Ginger. I have had a wild ride trying to get a diagnosis without slapping the...

https://connect.mayoclinic.org/comment/331858/

research on Gelsolin (also called Finnish Amyloidosis

Discussion: Tips for Getting a Proper Diagnosis of an Autoimmune Disease

Support Group: Autoimmune Diseases

Posted: Jan 14, 2021

Well, I was started out on a clinical trial with Clofazimine only. It was 4 months...

https://connect.mayoclinic.org/comment/833429/

cell transplant 7 yrs ago for primary amyloidosis

Discussion: Nebulizing 7% saline issues

Support Group: MAC & Bronchiectasis

Posted: Mar 28, 2023

Hi @nick86, sorry to hear you have MGUS at a young age. The benefit to finding...

https://connect.mayoclinic.org/comment/957929/

and I think it’s a simple case of amyloidosis

Discussion: Does anyone have any info on MGUS treatment or risk of progression?

Support Group: Blood Cancers & Disorders

Posted: Nov 2, 2023

Very interesting discussion and I really appreciate the points of view of everyone here, thank you...

https://connect.mayoclinic.org/comment/961729/

whether acute like TBI or evolving like amyloidosis

Discussion: Let’s Change The Term “Mental Health”

Support Group: Depression & Anxiety

Posted: Nov 9, 2023

@patriciajennye @franknstein I have had back problems most of my life. When I was younger, I...

https://connect.mayoclinic.org/comment/183542/

L4, L5,, L3, L2, spondylolisthesis, amyloidosis

Discussion: Has anyone suffered from lumbar spinal stenosis? Did you have surgery?

Support Group: Spine Health

Posted: Feb 19, 2018

Thanks Kay, I was diagnosed with AL amyliodosis on October 9th, now it is Oct 24th....

https://connect.mayoclinic.org/comment/1161982/

Thanks Kay, I was diagnosed with AL amyliodosis

Discussion: Just diagnoised with Amyloidosis, kappa light chain restricted.

Support Group: Blood Cancers & Disorders

Posted: Oct 24 9:01am

BTW, if you read NIH funded or other research the 2020 and newer pubs are good...

https://connect.mayoclinic.org/comment/1159127/

is background info at https://www.amyloidosis.org

Discussion: Just diagnoised with Amyloidosis, kappa light chain restricted.

Support Group: Blood Cancers & Disorders

Posted: Oct 18 2:55pm

And don't forget all that you can get from the free sources. The NIH.gov, the OpenLibrary.org,...

https://connect.mayoclinic.org/comment/95828/

the OpenLibrary.org, CancerNet.org, Amyloidosis.org

Discussion: Chronic Pain members - Welcome, please introduce yourself

Support Group: Chronic Pain

Posted: Aug 10, 2017

@bunnysammy This is short and easy. Doctors like to be lazy, especially when they think it...

https://connect.mayoclinic.org/comment/648099/

some sort of myeloma, maybe Crohn, Amyloidisis

Discussion: Autoimmune diagnosing

Support Group: Autoimmune Diseases

Posted: Oct 25, 2021