My cardiologist says I have the same condition as you. I am currently waiting on specialist for treatment. I do have a question for all. My fatigue changes from day to day and sometimes by the hour. Anyone else?

See your neurologist and get a nerve and muscle conduction test. I had a very abnormal test with indications it is due to Amyloidosis. I also have cardiac AMY!

My partners journey started with signs of neuropathy but the specialist said they could find 'nothing' wrong. Almost three years later we finally got the diagnosis of AL-Amyloidosis. Presently my partner is afflicted with numerous organs affected and we are dealing with a roller coaster experience of one or another and sometimes many organs acting up. A challenging life.

Six years ago I was given nerve conduction tests, was treated for carpal tunnel on left side followed by surgery. Symptoms went away for about four years but then reappeared on right side. Did not have second surgery.
About three years ago my toe/feet turned from needles’n’pins to pain. Neurologist diagnosed as bi-lateral neuropathy. All symptoms consistent with wATTR. No current treatment other than Gabapentin which doesn’t always work. Onpattro is only indicated for hATTR.
Some apparently permanent curving of carpal-related fingers but not thumb or pointer.

Thanks Galparrot. I phoned neurologist and she suggested that it’s most likely the onset of carpel tunnel. She suggested wearing a wrist splint. I have been wearing it now for a couple of weeks full time and it’s definitely helped. I’m going to just wear it at night for a while to see if that would be enough to keep it at bay. I am back to my neurologist in Dec. I’d imagine they will do more testing then.