All The Tests Say That Nothing Is Wrong!

S.F., Webster, MA

My name is Sheila and I’ve been undiagnosed for 25 years now.  I know there must be someone out there who experiences similar symptoms as I do.  After all these years I’m beyond frustration.  All the doctors and specialists and testing they’ve done reveal nothing specific as to why I feel so ill. Most of the tests I’ve had I requested myself because I did a lot of research on my symptoms.  I would go to the library and read the Merck Manual and the Physician’s Guide to Rare Disorders.  I would go on-line and research some symptoms and go to the National Organization of Rare Disorders.  My symptoms mimic a lot of other known diseases but nothing shows up on any tests I have.

I’m starting to think I could have a new, not discovered yet, illness;  or doctors just aren’t quite putting the puzzle together.  One of the hardest things I experience is not being believed by the medical profession and by my family.  Doctors after a while start to think that maybe it’s all in my head.

My last specialist, a pulmonary doctor, looked at me and said “I believe you’re sick, it’s obvious, but I just can’t put a diagnosis to what you have. The CT scan revealed nodules on your lungs.  We need to check them every six months.  Maybe you’ve been exposed to something years ago … maybe bacterial, fungal or a toxin.

Still no answers.  Some doctors said fibromyalgia but I knew better. When they can’t diagnose you, they tell you it is fibromyalgia.

When I first got sick it seemed to attack my muscles …my legs, back and shoulders.  There was then ringing in my ears, severe headaches and a burning in my stomach.  Strange marks appeared on my skin that looked like tiny bites, something like mosquito bites, and cuts that looked like paper-cuts.  I developed shingles but that didn’t explain or  cause all the symptoms I was experiencing.  My periods stopped.

Then came Graves Disease, hyper-thyroid, and it affected my eyes.  My salivary glands swelled and it looked like had the mumps.  It never got better.  They gave me Prednisone for eye swelling and the Prednisone caused me to get Cushing Disease.  I got a big moon face, a buffalo hump on my back and a very swollen stomach.  My back would ache and I didn’t even want to leave the house.  I had not been forewarned of these side affects.  They slowly weaned me off the Prednisone and it took some time for all of the side affects to go away.

Two years ago, my body felt like it was shutting down.  I can’t explain the fatigue in words, the pain in my legs, in my groin, my bones, in the joints in my fingers and back bone, sinus pain, eye pain and pain in my lungs. My stomach swelled up and my breasts, shoulders, back and neck muscles swelled up.  I didn’t eat any more than I usually do but I gained weight and was swollen.   It sort of looked like I was on steroids.  Even the inside of my cheeks felt like they were swollen.  My skin started to get discolored on my neck and chest, like a discolored tan.

I feel my only hope now of any kind of diagnosis would be at the National Institute of Health in their research on un-diagnosed illnesses.