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Comments (749)

Happy to hear you are doing well. My husband was diagnosed with Cardiac Amyloidosis this past...

https://connect.mayoclinic.org/comment/898862/

husband was diagnosed with Cardiac Amyloidosis ... He has started with Vyndamax for Amyloidosis

Discussion: Recently diagnosed with AL Amyloidosis: Any advice?

Support Group: Blood Cancers & Disorders

Posted: Jul 20, 2023

If you have surgery for the carpel tunnel, make sure they test it for amyloid. Otherwise,...

https://connect.mayoclinic.org/comment/381214/

Otherwise, the testing is the same for AL amyloidosis

Event: Video Q&A about Amyloidosis – What Patients Need to Know

Posted: Jun 5, 2015

I Pamela is a care giver for my husband with Amyloidosis disease. He is now home...

https://connect.mayoclinic.org/comment/112206/

a care giver for my husband with Amyloidosis

Discussion: Meet fellow Caregivers - Introduce yourself

Support Group: Caregivers

Posted: May 8, 2017

@jstpeachy Thank you in advanced for including my husband in your prayers warriors. I will do...

https://connect.mayoclinic.org/comment/903397/

before he was diagnosed with Cardiac Amyloidosis ... tests to find out if he has the AL Amyloidosis ... Heart Failure caused by the Cardiac Amyloidosis

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

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

Posted: Jul 28, 2023

One more....is Amyloidosis a cancer or not? I have seen some physicians call it cancer, some...

https://connect.mayoclinic.org/comment/381139/

One more....is Amyloidosis a cancer

Event: Video Q&A about Amyloidosis – What Patients Need to Know

Posted: Jun 1, 2015

@beckyoutlaw1115 Maybe you have heard or read something that interests me. I have been reading about...

https://connect.mayoclinic.org/comment/172294/

have hATTRwt, or Primary hereditary Amyloidosis ... can mutate into almost any form of Amyloidosis ... over a thousand known mutations of Amyloidosis ... Amyloidosis is also called, by many

Discussion: Treatment for amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Jan 6, 2018

I was diagnosed with mgus April 2023, just diagnosed with lymphocytic colitis with colonoscopy biopsy. Starting...

https://connect.mayoclinic.org/comment/1035480/

awaiting biopsy test results for gi amyloidosis

Discussion: MGUS, SMM or MM With Chronic Diarrhea Or Other GI Maladie?

Support Group: Blood Cancers & Disorders

Posted: Mar 17 9:53pm

@michaeleta, not a clue for that reason, unless you had an AA gene from birth, and...

https://connect.mayoclinic.org/comment/336457/

Other than than that, do you have an Amyloidosis

Discussion: What causes cerebral amyloid angiopathy?

Support Group: Stroke & Cerebrovascular Diseases

Posted: Mar 5, 2021

I was diagnosed with laryngeal AL amyloidosis. I started getting carpal tunnel. My blood tests showed...

https://connect.mayoclinic.org/comment/381175/

I was diagnosed with laryngeal AL amyloidosis

Event: Video Q&A about Amyloidosis – What Patients Need to Know

Posted: Jun 4, 2015

@lorraine06 Welcome to Mayo Clinic Connect. Macular Amyloidosis is actually a dermatology disorder. Has your dermatologist...

https://connect.mayoclinic.org/comment/892990/

Macular Amyloidosis is actually a dermatology

Discussion: Macular Amyloidosis and skin rash

Support Group: Skin Health

Posted: Jul 9, 2023

Have not had a definitive answer to what type Amyloidosis I have . Had bone marrow...

https://connect.mayoclinic.org/comment/104722/

had a definitive answer to what type Amyloidosis

Discussion: Current diagnosis is Amyloidosis and multiple myeloma

Support Group: Blood Cancers & Disorders

Posted: Apr 20, 2018

I saw an interesting Mayo Clinic video by Dr. Martha Grogan on what is amyloidosis and...

https://connect.mayoclinic.org/comment/188376/

Martha Grogan on what is amyloidosis

Discussion: Rare Disease Day and Involvement

Support Group: Autoimmune Diseases

Posted: Sep 30, 2018

@kellye5 Honestly, all those are common dX within various Amyloidosis disorders, particularly Free Lite Chain, ATTR,...

https://connect.mayoclinic.org/comment/107460/

those are common dX within various Amyloidosis ... Read the Mayo and Alnylam stuff on Amyloidosis

Discussion: Autoimmune Diseases and Fatigue

Support Group: Autoimmune Diseases

Posted: Dec 31, 2017

So appreciate this! I'll be starting treatment for MGNS + amyloidosis shortly, which will reduce further...

https://connect.mayoclinic.org/comment/1034668/

ll be starting treatment for MGNS + amyloidosis

Discussion: Neuropathic Itch

Support Group: Neuropathy

Posted: Mar 16 12:32pm

@lesion The dementia you mention might be the result also of cerebral misfolded protein deposit disease,...

https://connect.mayoclinic.org/comment/382624/

misfolded protein deposit disease, or Amyloidosis

Event: Video Presentation: Advances in Alzheimer's Detection

Posted: Nov 7, 2017

My diagnosis, AL Amyloidosis with cardiac involvement, GI tract and peripheral/autonomic nervous system, My most problematic...

https://connect.mayoclinic.org/comment/381157/

My diagnosis, AL Amyloidosis with cardiac

Event: Video Q&A about Amyloidosis – What Patients Need to Know

Posted: Jun 4, 2015

See a hematologist/oncologist who is willing to work with the labs I mentioned elsewhere, or go...

https://connect.mayoclinic.org/comment/149851/

Most Amyloidosis is fatal, but if you

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

Support Group: Autoimmune Diseases

Posted: May 17, 2017

@Hi, Teresa. No, not much treatment, I think, other than tape to the next toe. Except...

https://connect.mayoclinic.org/comment/92105/

That is the norm in most forms of Amyloidosis

Discussion: Anyone here dealing with peripheral neuropathy?

Support Group: Neuropathy

Posted: Oct 30, 2017

I can't find any doctor near me (Delaware) to treat my amyloidosis lichen type. Johns Hopkins...

https://connect.mayoclinic.org/comment/381221/

doctor near me (Delaware) to treat my amyloidosis

Event: Video Q&A about Amyloidosis – What Patients Need to Know

Posted: Jun 6, 2015

@lch713 I know how that is. I was misdiagnosed with COPD and bacterial pneumonia for about...

https://connect.mayoclinic.org/comment/215074/

testing, I have some form of Light Chain Amyloidosis ... available. https://bit.Ly/1w7j4j8 "Amyloidosis ... list of needed tests is also on my Amyloidosis

Discussion: Late dx, only 16% lung function

Support Group: MAC & Bronchiectasis

Posted: Sep 7, 2018