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Best Medicines Used Today For Polyneuropathy Due To Wild Type Amyloidosis Non Genetic Type?

A MyAmyloidosisTeam Member asked a question 💭
Fresno, CA

low IGg also

May 19
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A MyAmyloidosisTeam Member

Actually massaging my feet helps. I would like to get someone to do it for me 😹

May 20
A MyAmyloidosisTeam Member

I am just now trying Gabapentin. supposed to help. Jeffrey

May 19
A MyAmyloidosisTeam Member

Sounds familiar! Wish they all had portals I’ve learned to ‘copy and paste’ what Dr So and So said and did. And send it out 5 or6 times. Learning how to be more efficient in trying to not have to go see each doctor so many times. Two doctors ordered labs this week, and some are the same ones. ? I will go to lab with both sets of orders and let lab figure it out. I then need to notify at least 4 doctors when lab results are available Good thing using computer is something i can do 😃. Hugs to everyone and Happy Sunday 🤗

June 2
A MyAmyloidosisTeam Member

We found it's very difficult to get doctors from different institutions to collaborateor talk to each other. After supplying each of them with each other's email addresses and writing them emails asking for consensus on treatment, we are still waiting after weeks of trying. Next best thing has been to communicate directly with each doctor through the patient portals and then share their replies with the other doctors ourselves. Not ideal but better than nothing. You really have to advocate for yourself.

June 2
A MyAmyloidosisTeam Member

Primary doctor had prescribed gabapentin earlier, but I was more than as little woozy - so stopped taking it.

Does anyone else have the problem of too many doctors who don't seem to talk to each other? I call it my DIY Health Care Coordination - being retired I can find time to do this in between appointments. But I get behind in other things I need to do, Like trying to figure out what to do to take care of being told that due to breach in AT&T my information is on the Dark Web -that was a real learning experience.

June 1

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