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.

@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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@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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@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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