Why Did It Take Doctors So Long To Figure Out What My Husband’s Disease Is?
It took almost three years of visiting our family Dr and getting referrals to specialist for the various symptoms my spouse was presenting with over this time. Nobody connected the dots and only… read more
Symptoms Amyloid Peripheral Neuropathy
Hi. I had a numbness feeling in my left arm and hand for a few weeks about 6 months ago. It disappeared so I didn’t think too much about it. It’s back again now for a few weeks and I sometime get slights pins and needles in the tips of my fingers. Could this be a symptom of neuropathy? Could it be there for a few weeks, disappear and then come back again? I have hATTR cardiac Amyloidosis and am in Vyndaquel for 8 months now. Thank you.
Me too, Edward4. Mine is worse in my hands. I was not affected by Covid at all. I'm getting the RSV shot soon.
Can People Live 10 Years With Almoilafes
I think it depends on the person, the organ involvement, when treatment was started. There’s a lot of variables. Try to be positive and don’t put a number on it. There is lots of meds in their final… read more
Management Of AL Amyloidosis, Cardiac?
General Feedback for improvement in Medical Management by Hospitals for the Patients of AL Amyloidosis and Cardiac one in Particular: ( Draft as on 30/08/2023)
In order to address the issues and concerns regarding the management of Cardiac AL Amyloidosis, it is important to initiate a debriefing session with the medical team involved in the patient's care. Even the explanations offered on the pathways of treatment as Immunotherapy + Chemotherapy as against BMT are vague ,unclear, and scary with… read more
Mr. Joel - I am following your advices that are very meaningful. I was looking for AL Amyloidosis, Cardiac Specialist ,who may contact through Teleconsultancy
I was curious to get the Q & A Bank… read more
Accidental Post Deletion
I deleted a post that was a reply to Satish Chandra and it seems to have deleted the entire thread. Can someone restore the thread?
Thanks for your guidance, purchased the Book- a great read How to be Sick by Toni Bernhard and also bought the monthly subscription of Uptodate.Com
However ,still realize that the cure is far from… read more
Are Antibodies Used To Treat Attr Amyloiosis
Not sure!
What Antibodies Used To Prevent Wild Type Amyloidosis
My husband has wild type and he is only on Vyndamax. We've never heard of a preventive treatment. He goes to Penn Cardiac in Philadelphia. Please keep me posted if you find out anything new and I will… read more
Can Stiffened Left Ventricle Wall Caused By Amaloids Be Fixed By A Septal Myectomy?
Anyone Experiencing Weight Loss?
I have HATTR Amyloid resulting in my having Cardiac Amyloidosis and Peripheral Neuropathy. I am taking Vyndamax and soon to start Amvuttra (spelling) could these be the cause of my weight loss.
My wt goes up and down like a thermometer ... I went from 194 to currently 154 and I am 5'6 I don't have to exercise..I have no appetite at all but like I said I have reported this and my friends and… read more
Anything Out There To Remove Existing Amyloid.
Is not Alexion AZ has started phase 3 Clinical Trial not included India?