generalized fluctuating edema/desperate

[RareedemaUS]

I have been going to doctors and they say everything is normal.  I have a very unusual edema, very prevalent on the face.  When I exercise it goes away but shortly after, all the fluid comes right back on the face.  As soon as I start eating the face starts to swell.  If I don't get enough sleep the face swells.  I have tried everything under the sun from ayurveda, western medicine, supplements, diet change, and on and on and on, but his condition simply keeps getting worse.  Really desperate for answers.  No one can figure it out.  Have any medical experts on this board dealt with anything like this at all??  Please advise.  

[1maik]

Hello!

I had the same symptoms, basically.
No doctor even believed me before i took some photos of the reoccurring/fluctuating  swelling. Freezing cold weather was the biggest trigger, also others like alcohol, right away edema. My nose was affected the worst. I've Had all possible  tests. No luck on them.

One day i found a small bump under my skin right in middle of the edema area. It was a keloid that was later surgically removed under the skin. After that symptoms disappeared.
Try to find your bump, if there is one to find.
Mine was not visible on any mri / x-ray or naked eye on the skin. Really only afterwords from the photos i can hardly see it.
Only way you will find it is by touching when swelling is not present.

So it was inflammation that did not show up on any test. Try to tape your swelling area night time to let the selling come down, so you could find the cause. Try it. Wont cost you much!



Best of luck

[japat]

Sorry for replying so late.  I am just now checking this site after a long time.  I send you a personal message.  Please contact me as soon as you get this message.  Thanks.  

[alonegirl]

Sounds like you have edema of the face. I was the seventh person diagnosed in the us and less then 100 in the world, says the mayo clinic. So it's not suprising that no one has heard of it. I went to doctors for seven years until I found out. Contact me if you want more information I hope for your sake it's something else. If you do I would suggest a three day allergy test and an environment allergy test. But if your like me you'll just find out that you have to live in a plastic bubble for your face to be normal... but I am allergic to plastic.  haha

[Dr Santos]

Hi,
Thank you for your update. I'm sorry to hear what you have been through for the last 18 years. Can you elaborate on the weakness in your muscles? Nerve conduction tests and EMG may also help, if it has not been done yet. Take care and hope to hear from you soon.

[RareedemaUS]

Dr. Santos,

    Thanks for the reply!!  However, comprehensive blood tests thatcheck enzymes, electrolytes, organ functions, cholesterol, thyroid, vitamins, etc.....all come back normal all the time.  CT scans and MRI's always come back normal as well.  The doctors are stumped by this as well and I have been living with this for 18 years.  
    The problem is that they simply cannot locate any underlying cause.  Every test comes up normal.  However when they see me and see the edema under observation they are stumped.  They cannot figure out what is causing so much fluid retention.  Virtually everything seems to aggrivate this edema.  
    Do you have any  other insights on this at all?  Every doctor I have spoken to says they have never seen anything like this, ever.  No doctor I have met has ever even heard of, read about, or studied this type of an edema.  
     It is a complete mystery to them.  Test after test has ruled out every condition under the sun that causes edema yet I have it over my entire body.  The mysterious part is that it fluctuates all the time.  It isn't a consistent edema.  
    Also my muscles are very weak.  Please help!!

[Dr Santos]

Hi,
How are you? What tests were done? The cases with facial edema commonly encountered are usually associated with allergic reaction, drug reactions, surgery ; injury or trauma to the face; and nutrition deficiency.  Imaging modalities like CT scan and other laboratory tests will help determine the underlying cause. Check with your doctor for proper evaluation. Take care and regards.