Discussions By Condition: I cannot get a diagnosis.

Cocktail Of Miseries. (With Bracket Asides) Part Two

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • November 24, 2008
  • 03:14 AM

Now, let me ping-pong between an older piece of history (why I have been a recluse for the past three years) and a shot in the dark theory for what might be going on with me now. If there is a professional who wants to comment, and tell me whether its realistic or not, I'd appreciate it.

Three years ago, I noticed a change in my face. It was my upper jaw. It was my lower jaw. It was both, at once. They grew out of proportion. The upper jaw moved forward until it was pressing against the inside of my lip so hard, that it started leaving imprints in the flesh. The lower jaw grew out, and downwards, on an an odd angle. It also hurt a lot, and made eating difficult. The pain was nothing compared to what it did to the rest of my life. I was known for my looks around town, and this problem effectively destroyed my face, while causing me terrible discomfort. I stopped going out. It wasn't worth it anymore.

Anyway, I noticed that the place where the bone had overgrown on my jaw had a bumpy, rough texture, unlike the rest of my jaw which had grown normally (smooth). Then, not long after that, while playing guitar I noticed that the joints of my elbows were big and square and awkward, when they had not been before, and it was making my playing more difficult. My skull seemed to have grown as well, in the same weird way that bone seemed to have grown elsewhere.

This was over a year or more before the new years eve "attack". I didn't remember that I had researched bone diseases back then, until just recently, when I came back across the first disease I ever read about and thought I might have: Pagets Disease.

Reading up on Pagets again, was kind of a revelation. I didn't remember anything about it at all, and then here it was, the very first thing I ever thought of as a possibility, and it seemed that it might have been the right one all along:

- Pagets causes jaw-bones to overgrow.

- Pagets affected bone grows in a rough bubbly pattern, often compared to cotton wool, something I had noticed myself on my jaw without ever having heard of Pagets

- Pagets disease is known for causing large, oversized and awkward elbow joints (another thing I had spotted as being odd before ever hearing about Pagets.)

- Pagets causes deep aches which feel like they're "inside" the bones. It is strictly a bone pain. This fits more with the pain that I experience, than the pain descriptions for MS and Fibromyalgia and other disorders

- Pagets causes muscle weakness, which I often have, in conjunction with the bone pain

- Pagets affected bone, overgrowing, pinches and pushes against nerves, causing numbness and tingling, which I have had

- Pagets causes cognitive impairment sometimes, when the skull grows in a way that damages nerves connecting to the brain

- Pagets causes vision problems, again in the same way. and it causes the exact type of visual disturbance that I have.

There is more, and it all more or less lines up with my own symptoms. Remember though, I only just turned 20 years old. The average age of diagnosis for Pagets is much older, which makes it less likely that I have it. I would like to hear from people who actually know what they're talking about on this. I'm just connecting some dots, and trying to find out what works.

I know nobody "wants" a disease, but I hope that this is what I have, because its a universal explanation for every problem I have ever had. That would be a relief. I'm also interested in Cushings, and I would not be surprised if I had that illness instead of, or maybe even additionally to Pagets. I also wouldnt be surprised to learn in the future, that disorders like fibromyalgia and CFS never really existed, and were just other known disorders, such as Cushings, not properly identified.

Anyone with information pertaining to this kind of disorder, comment back or start a new thread. People need alternatives to the homogenized Family MD answers they are bound get at the doctor's office, like "it's probably just anxiety" or "drink lots of water, and get plenty of rest.....now will that be debit or credit?"

Now everyone go blast "Gimme The Cure" by Fugazi. It's the new theme song of miserable disease sufferers everywhere.


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