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Amyloidosis - but no type yet. How do I get that?

Autoimmune Diseases | Last Active: Jun 11 7:22am | Replies (10)

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@pacathy

I'm sure the referral to a heart failure doc was a shock. It's a great sign that you don't have heart signs like shortness of breath and foot swelling. I imagine the referral is because the disease isn't common and the doc may have more experience with amyloidosis than others in area. He also probably wants the doc to do echos and other tests so that if you have cardiac involvement, (you may not), it can be caught early and treated.
Cleveland Clinic had some good info on their site. I linked one article below.

There's also the Amyloidosis Foundation which has a list of centers in case one is close to you.

Here is an article about carpal tunnel and amyloidosis. https://health.clevelandclinic.org/attr-cm-and-carpal-tunnel?utm_source=google&utm_medium=ppc&utm_campaign=cc_cs_ag_175165839515&utm_content=cc_cs_cid_%7Badid%7D&gad_source=1&gad_campaignid=22198030319&gclid=EAIaIQobChMIpey7svvhjQMVPVj_AR0I_idNEAAYAiAAEgJ1d_D_BwE

Note-it says all patients who have carpal tunnel amyloid do not get the cardiomyopathy and that the cardiac disease is now treatable.
Good luck and keep us posted.

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Replies to "I'm sure the referral to a heart failure doc was a shock. It's a great sign..."

That article is great!! I had my kids and husband read it to help them better understand.