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no diagnosis - what next

Just Want to Talk | Last Active: Nov 2, 2019 | Replies (15)

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@johnbishop

Hello @justwrite, I would like to add my Welcome to Connect along with the other members. As members we are not able to provide a diagnosis or suggest treatments but we can share our symptoms and what has helped us. I had swelling similar to yours but only in my legs and mostly my right leg and ankle. I was diagnosed with lymphedema and now wear 20 - 30 mg compressions socks to help with the swelling during the day. You mentioned seeing a cardiologist, vascular surgeon, and gastro [for liver, kidney] doctor to figure out what is causing the swelling. Your symptoms sound a lot like lymphedema.
It's easier for the body to push the lymph fluids when you are laying down. What does the lymphatic system do? -- https://www.medicalnewstoday.com/articles/303087.php

Did you have the lymphoscintigraphy test where they inject you with the radioactive dye and check how lymphatic system is working?

Lymphoscintigraphy - https://www.radiologyinfo.org/en/info.cfm?pg=lympho

Mayo Clinic has mory information on diagnosing and treating Lymphedema here:
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687

Mayo Clinic is very good at diagnosing hard to diagnosis conditions. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Replies to "Hello @justwrite, I would like to add my Welcome to Connect along with the other members...."

HI, thanks for sharing. Vascular surgeon says it's not lymphedema but I havent had a specific test. Each dr ordered tests per their specialty. Carido said it's not your heart but let's do an echo; gastro said it's your heart not liver/kidney but let's do a CT. VAscualr guy said it's none of those and not aging. Primary said it's low protein -- no. I've had very low protein before due to Crohn's disease. Never happened before. I've stopper worrying but would like to know what's up