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Comments (757)

@houbrem Well,yes, 8 years of constant right side pain, but the docs said I had a...

https://connect.mayoclinic.org/comment/217620/

neurocognitive changes in hereditary gelsolin amyloidosis ... (AGel) amyloidosis.

Discussion: Pain under ribs for 9 years

Support Group: Chronic Pain

Posted: Sep 21, 2018

Yes, Joyce, I had testing over the summer for amyloidosis before I started on mavacamten (Camzyos)...

https://connect.mayoclinic.org/comment/1176588/

I had testing over the summer for amyloidosis ... Amyloidosis is no doubt serious, but

Discussion: Why Camzyos instead of surgery?

Support Group: Hypertrophic Cardiomyopathy (HCM)

Posted: Nov 20, 2024

*** Edit Update Nov 16, 2023 *** FPN Webinar: CIDP: From Soup to Nuts, with Sami...

https://connect.mayoclinic.org/comment/909525/

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

Discussion: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Support Group: Autoimmune Diseases

Posted: Aug 8, 2023

My husband will probably start with chemo depending on the results of the immunoglobulins panels. His...

https://connect.mayoclinic.org/comment/902284/

Jacksonville diagnosed him with Cardiac Amyloidosis ... has been taking Vyndamax for his TTR Amyloidosis

Discussion: My Autologous Stem Cell Transplant Journey - Mayo, Phoenix

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

Posted: Jul 26, 2023

I just noticed something while reading this line. It may be helpful for whomever started it....

https://connect.mayoclinic.org/comment/65216/

obligate positive sign of some forms of Amyloidosis ... Bronchiectasis, and also with various forms of Amyloidosis

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

Support Group: MAC & Bronchiectasis

Posted: Sep 7, 2018

@ling123 I have not been diagnosed with MAC, but probably should have. I have, however, been...

https://connect.mayoclinic.org/comment/212560/

otherwise related to some form of Amyloidosis ... Martha Grogan's video on Diagnosing Amyloidosis

Discussion: Managing MAC without antibiotics

Support Group: MAC & Bronchiectasis

Posted: Aug 21, 2018

@ssandy Sandy, my dose of simvastatin was raised by half, and I was on it for...

https://connect.mayoclinic.org/comment/100011/

I have Light Chain Amyloidosis.

Discussion: Is there any connection with statin use and neuropathy?

Support Group: Neuropathy

Posted: Dec 23, 2017

Hello. Old Karl here. Lots of issues. Probably AL amyloidosis, systemic, hereditary. Constant headache pain for...

https://connect.mayoclinic.org/comment/94815/

Probably AL amyloidosis, systemic, hereditary

Discussion: Chronic Pain members - Welcome, please introduce yourself

Support Group: Chronic Pain

Posted: Oct 5, 2016

What a relief @joycehocm! I know that must have been a heavy thought burden thinking amyloidosis...

https://connect.mayoclinic.org/comment/1201696/

been a heavy thought burden thinking amyloidosis

Discussion: Why Camzyos instead of surgery?

Support Group: Hypertrophic Cardiomyopathy (HCM)

Posted: Jan 1 10:40am

Hi @angielewis1959, I haven’t seen any posts where members have mentioned trying Amyvuttra but @steeldove posted...

https://connect.mayoclinic.org/comment/1027884/

hereditary transthyretin-mediated (hATTR) amyloidosis

Discussion: Has anyone had IVIG Infusions for Neuropathy?

Support Group: Neuropathy

Posted: Mar 5, 2024

Hah. Whatever works, eh? 😂 You made me laugh out loud this morning. I intended to...

https://connect.mayoclinic.org/comment/726708/

you in this conversation about AL Amyloidosis

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2022

@paulfj067 Just a little something to remember. Every bit of whatever that creates neuropathy attacks a...

https://connect.mayoclinic.org/comment/92417/

diabetes to several thousand types of amyloidosis

Discussion: Anyone here dealing with peripheral neuropathy?

Support Group: Neuropathy

Posted: Sep 10, 2018

You could have a bone marrow biopsy. I would ask for your Dr to do a...

https://connect.mayoclinic.org/comment/1119116/

I have amyloidosis.

Discussion: Diagnosing amyloidosis: Why monitor (PYP scan) instead of biopsy?

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2024

The surgery was for hypertropic cardiomyopathy and the andurism. The heart tissue was in essence a...

https://connect.mayoclinic.org/comment/1068657/

which after weeks was determined to be amyloidosis

Discussion: Cardiac Amyloidosis

Support Group: Heart & Blood Health

Posted: May 15, 2024

I had positive results from a kidney biopsy sent to Mayo Clinic with an Amyloidosis diagnosis...

https://connect.mayoclinic.org/comment/965936/

biopsy sent to Mayo Clinic with an Amyloidosis

Discussion: Positive test results for amyloids

Support Group: Blood Cancers & Disorders

Posted: Nov 16, 2023

There are several things which can cause this beyond bladder cancer. Kidney failure. Liver. Prostate cancer,...

https://connect.mayoclinic.org/comment/78098/

I have a form of amyloidosis (Gelsolin

Discussion: blood in urine with no cause

Support Group: Kidney & Bladder

Posted: Jul 3, 2020

So sorry to hear this about both being coupled as in your case! Amyloidosis sometimes seems...

https://connect.mayoclinic.org/comment/869639/

Amyloidosis sometimes seems to be a

Discussion: Diagnosed with both multiple myeloma and amyloidosis: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: May 31, 2023

@heartnsoul36 I, too, have a first degree AV block. The hematologist says, and Mayo agrees, that...

https://connect.mayoclinic.org/comment/182458/

this is secondary to several forms of Amyloidosis

Discussion: First degree av block

Support Group: Heart Rhythm Conditions

Posted: Jan 28, 2018

Hi, Colleen. First off, I am not a med pro, although I have spent more time...

https://connect.mayoclinic.org/comment/163979/

daily newspaper a brief article about Amyloidosis ... book from Mayo, Morey Gertz ed., "Amyloidosis ... Found the Amyloidosis Foundation, and

Discussion: GFR of 39 and microhematuria over 3 mo

Support Group: Kidney & Bladder

Posted: Oct 4, 2017

yes, what you learned is correct. The AvWS was diagnosed first, and when the usual suspects...

https://connect.mayoclinic.org/comment/1185087/

myeloma, etc), I knew it had to be Amyloidosis

Discussion: Anyone w/ both AL Amyloidosis & Acquired Von Willebrand Syndrome?

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2024