no diagnosis - what next

Do your legs swell after standing up? If you stay in bed do they swell? If they do swell how long after you awake does it happen?

Hello @justwrite and welcome to Mayo Connect. I'm glad that you posted your concerns here on Connect. As you may know, Mayo Connect cannot offer diagnostic help. We are patients, like yourself, who can share our own experiences and we can offer you support and encouragement during the process of getting a diagnosis from your medical team.

You do not mention your age or any other health problems you have. However, I'm wondering if you have seen an endocrinologist. These are great doctors who have a tremendous knowledge of the body system and can often put together the puzzle pieces of difficult to diagnose problems. Have you seen an endocrinologist yet?

Have any other family members had problems such as this?

@justwrite- Good morning and welcome to Mayo Connect. As @hopeful33250 stated we can not offer you a diagnosis. What proceeded these awful, and I imagine very painful swelling? When do these occur during the day? Just at night? Have you changed what you eat for dinner or as a snack before bed?

@justwrite What makes you feel the swelling is not fluid? If there is swelling there has to be fluid there I would think. I had terrible swelling in my feet and ankles at one point, much worse when traveling or when I had much sodium.
I presume it is after you get up and your weight is on your legs, that they swell. That really is a conundrum, particularly since you have seen numerous doctors and none have figured it out. I went through a similar problem, the reason my problem was not diagnosed was that none of the doctors were adding up other symptoms that seemed to be unrelated but actually were not.
I have said numerous times on this forum, I will never again rely on local doctors to figure something out. If you have not seen doctors at a major medical facility, preferably a teaching hospital, then go to one. It took almost a year and a half for me to get a diagnosis. That will never happen again.
JK

@justwrite My friend has the same thing in her legs Finally diagnosed with lymphedema .Have you asked your Dr about this?

@justwrite, @lioness, @contentandwell, I think it is time to call John in on this one. @johnbishop....can you shed some light on @justwrite's issue? Thanks, Chris, et al.

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.

It's been going on since August. Starts the minute I get up in the morning--both legs and right arm. Dont eat salt, low fat diet. Doctors say it's not a big deal. It is to me -- never had before. Disconcerting

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

Hi I called an endocrinologist and the nurse said that limb swelling wasn't an issue for an endo. No other family members have had. I have Crohn's disease and it took me 5 years to get diagnosed -- had all the tests and nothing showed. Only symptom I had was partial blockage, which would send me to ER. Finally a new gastro suggested exploratory surgery and they found it. So knowing I was atypical in presentation with that, makes me wonder about this. My gastro was awesome but has retired. I might email him. He's literally a genius.