Discussions By Condition: I cannot get a diagnosis.

desperate and need advice

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: alexburton
  • July 10, 2008
  • 00:18 AM

It started with an injury I had several years ago. I was hit on the upper lip by a hockey puck. The speed of the puck caused some serious damage. One of the philtrum columns broke. Complicating things was the fact I had pot and speed in my system. That fact led me to avoid the hospital until the next morning. I was dumb, I know.

Nothing much was done at the hospital. Was told to wait for the swelling to go down.
It was obvious there was some structural change to my face above the lip below the nose. Days later I went back to the hospital only to have the doc tell me I was ok.(I went back several times over the next few weeks) I had a full neurological exam which was normal.

Over time I started to notice these odd changes in my appearance. It was as if my body did not know how to adapt to the injury. I would get spasms/twitches under the skin at the site of the injury and all over my body(mostly on the face) over the next couple years my face seemed to lose all its muscle and definition. I don’t know how to say this other than my face and body seemed to slowly be losing some kind of tissue.

I kept losing some tissue everywhere on my body- my arms, my face, my legs. My head has gotten smaller, my face smaller, my lower lip has lost a lot of tissue,my penis shrunk and lost tissue and I have lost the ability to feel an orgasm. Yes over time all these things have happened. These things that have happened to me should be impossible. Was it the drugs in my system at the time combined with the injury that started some chain reaction? I have no idea. Docs havn’t been any help either. I’ve been to many of them.

During this time I also started to experience hormonal changes.After going to a couple endrocrinologists I was diagnosed with hypopituatarism with growth hormone deficiency(I’m now on GH treatment) . The MRI of the pituitary didn’t show a pituitary tumor though. That diagnoses explained the swollen stomach and the muscle loss but not the the crazy stuff that was happening to me . A tumor wouldn’t cause some of the things that are happening to my body. In theory what is happening to me shouldn’t be happening and probably has never happened to anyone else before.

So I researched the pituitary gland and read that part of the pituitary gland is made up of epithelium tissue. In fact the part that secretes growth hormone is made of epithelium tissue. Epithelium tissue covers practically the whole body. Could the initial injury caused some damage to the epithelium tissue that has just gotten out of control? The pituitary problem is a big big clue as to what is affecting my whole body I know this much. I am sure there is something wrong with either mucous membrane,epithelium tissue, fascia, or connective tissue (or all of the above)

Now the problem is finding a Doctor that is going to help me.I’ve been to around 10 Docs and none have been any help. In fact none have even tried. Several of them said I should see a psychiatrist! One of my regrets through all this is that I didn’t stick with one doctor through all this so he could notice all the changes I’ve gone through. The only problem with that is when a doc tells you to see a psychiatrist it’s pretty much time to find another doc. Mind you I’ve never just walked into a doc’s office and said “hey doc my head is shrinking” I’ve explained the whole story in a rational way. The problem is what’s happening to me is impossible and it defies every law of medicine.

So any advice would help. What kind of doctor/specialist I should see? I need to get biopsy’s of all my tissues and most of all I need a doc to really aggressively go after this with me because I am really running out of time.

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