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Wow, sounds like you've really visited some great places, I can't belive they have not come up with a diagnosis...Did they think it could be SclerodermaScleroderma Scleroderma - resources?? I think there are many variations of this, here's one link:
I'm sorry you have to go through this - it must be frustrating to look for answers and keep coming up with nothing - but I'm sure if you're persistant you will. I would be hounding doctors left & right until they helped me figure it out.
At this stage of the game, I just want out of life. Assisted suicideSuicide and suicidal behavior is illegal in New York, so I've thought about moving to Washington state. Does anyone have any info on how to do this?
WOAH Paul... Please don't think that this is the only answer. I am seriously NOT qualified to discuss this with you, but this is not the answer. I'm sure of it.
Have you sought out help from a psychologist or shrink of some kind? They could possibly help you through the mentalMental retardation Mental status tests challenge of your problems. Been there done that? Or no?
I think you need to see a doctor. Though, don't fret.
~Kate
Wow, sounds like you've really visited some great places, I can't belive they have not come up with a diagnosis...Did they think it could be Scleroderma?? I think there are many variations of this, here's one link:
http://adam.about.com/reports/000088.htm
In looking into this there was a reference to Diffuse Systemic Scleroderma... here's an excerpt: "About 95 percent of people with Diffuse Systemic Scleroderma show some early thickening and hardening of the skin, especially of the hands, arms and/or face."
I wonder if it could be something rare like: Harlequin Ichthyosis... it's probably not this exactly, I saw a show on Discovery Health about this extremely rare disorder that causes the skin to overproduce, crack & become infected.
If I were you I would find yet another doctor and insist that they help you figure out the issue... Maybe you can do some research about doctors that have specialties in facial skin disorders - and contact them? I unfortunately do not know of anyone, my aunt is an Ear Nose & Throat doctor -- but I don't think she would know anything about this, I could ask though, I will see her in a few weeks.
I'm sorry you have to go through this - it must be frustrating to look for answers and keep coming up with nothing - but I'm sure if you're persistant you will. I would be hounding doctors left & right until they helped me figure it out.
good luck.
At this stage of the game, I just want out of life. Assisted suicide is illegal in New York, so I've thought about moving to Washington state. Does anyone have any info on how to do this?
Have you sought out help from a psychologist or shrink of some kind? They could possibly help you through the mental challenge of your problems. Been there done that? Or no?
I know you've seen 100s of doctors but I think there must be someone out there with an answer. The fact that your bones are weak, depression, etc - leads me to believe something internally is causing this. It seems to me you've had every test in the book. Have you been tested for Shingles leading to Neuralgia or MMR? Have you tried going gluten free before? What about other food diets?
ALSO -- have you visited any chinese herbalists or anything like that? Acupuncture? I know that these herbal remedies/way of life mixed with acupuncture have helped many people. Especially being in the NY area - I'm sure there is an abundance of them.
It seems that if you've exhausted all of the traditional resources, a more "unusual" source might be the way to go -- the chinese diet & theories are really interesting. I think you could benefit possibly from a new diet - yoga - etc? Not sure Paul, I'm trying to give you a bunch of different ideas - my last one seems best, a new method of healing. You could use this to get through the pain and possibly be cured. Please keep me posted of what's going on - try not to give up hope! Please! And try to let your family know how they are negatively affecting you...
keep me posted....
Today I went to the Harris Skin and Cancer Center at the NYU medical center. The doctor was amazed at how abnormal my skin was. Patches of shiney skin all over my cheeks. All of my skin is dark, and the skin on my whole body has a slight sheen. It feels as if someone put crazy glue on my face, and let it dried. Very surreal.
The doctor thinks that it is something called mucinosis, and ordered blood work. It could be the residue effect of taking methotrexate, but not sure. He suggested a biopsy, but I keloid scar and don't want any more trauma in my life. The week bones could be a result of taking prednisone, and the depression is a normal reaction to this entire mess. Although the doctor, Dr. Andrew Franks, said there is treatment, he didn't say what the treatment entailed. Instead, he told me to come back in a month for the results of the blood test. The blood tests consisted of an immune complex screen (815), Immunolixation, Serum (816), and Ig Quant (IgG, IgM, IgA). Not sure why he wants me to wait a month to come back, especially since the results will be in within two weeks (I was advised of that by the person taking the blood).
It is good just to know that the doctor can physically see what I've been saying for years. The tightness and extra smoothness of the skin was self evident. Accordingly, this might not be an allergic reaction to something exterior, but an auto-immune related reaction