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Comments (757)

@lazyironman What a name! Anyway,I respond to your input, and am glad to see you popped...

https://connect.mayoclinic.org/comment/177363/

(probably AL, ACys, AGel, etc), of Amyloidosis ... them could even recognize the word, Amyloidosis

Discussion: Living with Pulmonary Fibrosis (sometimes): Finding strength

Support Group: Lung Health

Posted: Dec 28, 2017

My husband’s heart was not affected by amyloid. His was localized to the kidneys. His kidney...

https://connect.mayoclinic.org/comment/1024115/

Amyloidosis is tricky, and MD Anderson

Discussion: Newly dx with stiff heart

Support Group: MAC & Bronchiectasis

Posted: Feb 28, 2024

I researched and found out the purpose. My hemo/onc had my gastroenterologist do a biopsy for...

https://connect.mayoclinic.org/comment/754121/

gastroenterologist do a biopsy for Amyloidosis

Discussion: What’s the science on diet and MGUS/SMM?

Support Group: Blood Cancers & Disorders

Posted: Sep 26, 2022

@davej It is interesting how much can be seen on a good EKG, TEE or not,...

https://connect.mayoclinic.org/comment/330291/

and rest, a strong sign of cardiac amyloidosis

Discussion: I'm worried about chest pain/pressure

Support Group: Heart & Blood Health

Posted: Mar 4, 2021

I'm so sorry you're having to deal with all of this, it is indeed a big...

https://connect.mayoclinic.org/comment/1216639/

m glad you're being tested for amyloidosis

Discussion: Lymphocytes on CBC

Support Group: Blood Cancers & Disorders

Posted: Jan 19 1:47pm

This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It...

https://connect.mayoclinic.org/comment/64605/

that I found online about light chain amyloidosis

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

Support Group: MAC & Bronchiectasis

Posted: Jun 12, 2018

Relocating to Phoenix at some point and called Mayo Clinic for an appt. I was told...

https://connect.mayoclinic.org/comment/1031626/

nerve biopsies, tests to r/o MS and Amyloidosis

Discussion: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Support Group: Autoimmune Diseases

Posted: Mar 11, 2024

About chronic bronchiectasis. Several sources name this as a Positive Obligate sign of Gelsolin, or some...

https://connect.mayoclinic.org/comment/321181/

Gelsolin, or some call it Finnish Amyloidosis

Discussion: Chest and upper back pain with bronchiectasis and pseudomonas

Support Group: MAC & Bronchiectasis

Posted: Nov 21, 2020

Although I am diabetic (II), my neuropathy does not seem to be connected to the Glucose...

https://connect.mayoclinic.org/comment/211009/

seems to be my Gelsolin (AGel or GSN) Amyloidosis

Discussion: Looking to connect with people who have non-diabetic neuropathy

Support Group: Neuropathy

Posted: Jul 7, 2020

@edda Hi, Edda. Don't be scared. The only thing to be scared of is that you...

https://connect.mayoclinic.org/comment/182461/

Medicare covers the basic tests for amyloidosis

Discussion: First degree av block

Support Group: Heart Rhythm Conditions

Posted: Feb 7, 2018

I had neuropathy in my left foot/toes and terrible nerve pain. The mm and amyloidosis were...

https://connect.mayoclinic.org/comment/104687/

The mm and amyloidosis were diagnosed

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2016

@crissy2450 of the eight siblings of my family, and a dozen or so of their grown...

https://connect.mayoclinic.org/comment/217290/

14 have been dX with some form of Amyloidosis

Discussion: Chemo side effects

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2018

@hopeful33250 Sure, Teresa. The nerve/muscle issue is not difficult to understand. Amyloidosis is a matter of...

https://connect.mayoclinic.org/comment/175113/

Amyloidosis is a matter of genetically ... cerebellum and is called cerebral cortex Amyloidosis ... 0.500 G/24 hour, you have some form of Amyloidosis

Discussion: heartbeat too fast with congestive heart failure

Support Group: Heart & Blood Health

Posted: Nov 21, 2017

Hi there, I have the exact same symptoms as you and I am scheduled for a...

https://connect.mayoclinic.org/comment/980344/

the 29th to confirm or rule out AL Amyloidosis

Discussion: Amyloidosis and Polyneuropathy?

Support Group: Autoimmune Diseases

Posted: Dec 14, 2023

@msbailey75 My heart muscles are stiffening, and enlarging. They quiver and vibrate as they contract and...

https://connect.mayoclinic.org/comment/383391/

what I have, a hereditary Gelsolin Amyloidosis

Event: Video Q&A about Adult Congenital Heart Disease

Posted: Sep 20, 2018

@ocogram I also have headaches almost every day, right behind the eyes and around the crown...

https://connect.mayoclinic.org/comment/96329/

I have ocular amyloidosis, systemic,

Discussion: Chronic Pain members - Welcome, please introduce yourself

Support Group: Chronic Pain

Posted: Nov 13, 2017

Upcoming webinar of interest... Foundation for Peripheral Neuropathy Webinar: Hereditary Neuropathy & Genetic Testing Thu, Oct...

https://connect.mayoclinic.org/comment/749431/

He co-founded the Penn Amyloidosis Center ... patients with hereditary and acquired amyloidosis

Discussion: TS-HDS Antibody and Small Fiber Neuropathy

Support Group: Neuropathy

Posted: Sep 14, 2022

@pedie Sorry to hear about your tough spot, but it is not too surprising. First, in...

https://connect.mayoclinic.org/comment/182048/

corneal lattice effect from systemic Amyloidosis ... If you read my larger story, Amyloidosis

Discussion: Acoustic neuroma, hydrocephalis, and vertigo

Support Group: Brain Tumor

Posted: Jan 20, 2018

Just a bit more for you. I have many dis-eases, and am learning they are all...

https://connect.mayoclinic.org/comment/149849/

springing from or piggybacking on my amyloidosis

Discussion: Have a few autoimmune disorders - now have consistent low grade fever

Support Group: Autoimmune Diseases

Posted: May 17, 2017

Interesting note you give us. Almost everything you mention, except the specific diagnoses, I can relate...

https://connect.mayoclinic.org/comment/595137/

Hopkins, no less) had heard of, called Amyloidosis ... from Cancer to Multiple Myeloma to Amyloidosis ... under the name Gelsolin, AKA Finnish Amyloidosis

Discussion: Difficult case, several diagnosis, no solution yet

Support Group: Autoimmune Diseases

Posted: Apr 17, 2021