Symptoms Amyloid Peripheral Neuropathy | MyAmyloidosisTeam

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Symptoms Amyloid Peripheral Neuropathy
A MyAmyloidosisTeam Member asked a question 💭

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.

posted August 31, 2023
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A MyAmyloidosisTeam Member

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?

posted September 28, 2023
A MyAmyloidosisTeam Member

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.

posted October 31, 2023
A MyAmyloidosisTeam Member

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!

posted October 16, 2023
A MyAmyloidosisTeam Member

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.

posted September 2, 2023
A MyAmyloidosisTeam Member

Yes as neurological issues is #3 on the Amyloidosis list of body parts affected.

See your neurologist and ask for a COMPLETE (all body) ELECTRODIAGNOSTIC TESTING OF NCV/EMG.

posted November 18, 2023

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