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no diagnosis - what next

Posted by justwrite @justwrite, Oct 29, 2019

dont know where to turn; arms and legs swell twice their size. three months now. Not fluid. Not any organ failure, not venous insufficiency. have seen cardiologist, vascular surgeon, gastro [for liver, kidney]. when I wake up, I have regular skinny legs. within minutes, swollen twice their size.

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justwrite | @justwrite | Oct 31, 2019
In reply to @stuckonu "Do your legs swell after standing up? If you stay in bed do they swell? If..." + (show)
@stuckonu

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?

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When I wake up in the morning I have my regular skinny legs. Within minutes of standing they swell, and my right arm swells. Lasts all day, whether I sit, stand, put my feet up while I work. All dr.s have said it's not fluid.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 31, 2019
In reply to @justwrite "HI, thanks for sharing. Vascular surgeon says it's not lymphedema but I havent had a specific..." + (show)
@justwrite

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

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@justwrite you are right to want to know what's up with the swelling. Your body is telling you something is wrong as the swelling is not normal and something is causing it. If it were me, I would keep asking questions of my primary doctor until I find the answer or I would go to a teaching hospital or large healthcare facility like Mayo Clinic which hopefully could give me the answer.

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Merry, Alumni Mentor | @merpreb | Oct 31, 2019
In reply to @justwrite "Hi I called an endocrinologist and the nurse said that limb swelling wasn't an issue for..." + (show)
@justwrite

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.

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@justwrite- Your symptoms might be from Crohn’s disease. Swollen joints can cause your limbs to swell as well as your internal organs.

https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
https://www.crohnscolitisfoundation.org/what-is-crohns-disease/symptoms

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lioness | @lioness | Oct 31, 2019
In reply to @justwrite "It's been going on since August. Starts the minute I get up in the morning--both legs..." + (show)
@justwrite

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

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@justwrite I would certainly ask for the test that @johnbishop suggested . I hope you do go to a university ,teaching hospital If you are close to Mayo clinic I would go there if you can . Lymphedema is hard to diagnose but the symptoms you discuss certainly sound like it .Be proactive in this matter . It is your body .

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justwrite | @justwrite | Nov 2, 2019
In reply to @contentandwell "@justwrite What makes you feel the swelling is not fluid? If there is swelling there has..." + (show)
@contentandwell

@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

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thanks for response. I have crohns disease and it took me 5 years to get diagnosed because my symptoms were atypical. So I will keep going but not sure who to turn to next -- probably a teaching hospital

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