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Mastocytosis Or Undiagnosed Skin Condition


Hello everybody. I just found this site, and this is my first post. I have a disease called Mastocytosis. It first started during Desert Storm, but it was undiagnosed then. For 11 or 12 years it just appeared as little brown spots on my skin. In 2002 it started itching really bad. I saw 3 different Dermatologist, but they all gave different diagnosises. When I finally filed a VA claim in 2003 for an undiagnosed illness they sent me to their dermatology clinic who diagnosed it as Mastocytosis. After the diagnosis VA denied my claim do to the illness being diagnosed. I waited until September 2009, got all of my evidence together, got a doctors statement from my civilian primary care physician, a statement from my VA hemotologist, and had my VA dermatologist put notes in my VA medical records. All of the statements state that I had a skin condition in Desert Storm, and that the condition I have now is most likely the same condition that I had then. I also provided a medical examination form from 1991 (when I was still in the military) showing that I had a skin condition. VA set me up for a C&P exam. This exam took all of ten minutes. Their doctor decided that I did not have a skin condition back when I was in the military, even though the medical examination form states that I did. VA denied this claim last week strictly on what their doctor said. It went against all of the evidence and the statements from all three of my other doctors. Does anybody have a suggestion on the best way to appeal this decision?

Just a little background on this disease. It effects your skin first. It makes you itch all the time. Everything bothers my skin. Heat (from the sun, heating pads, moist heat), hot water, clothes rubbing it, etc. I am now allegic to things I have never been allergic to before. I have also become chemical sensitive. When it goes systemic it affects you liver, kidneys, spleen, lungs, and causes lesions. It can cause Degenerative Disc Disease, and cause lesions on your spine. I have had 3 Bone Marrow byopsies to see if it has gone systemic in me yet. It also causes muscle pains, bone pain, nausea, vomiting, digestive problems, among about 30 more symptoms.

I am wanting to find out if anybody here knows anything about this disease or if they have it. My Dermatologist at the Little Rock VA told me that he has seen more cases of Mastocytosis at the VA in adusts and children then he ever saw outside of the VA. This disease is what is called an orphan disease. It affects roughly .001%, roughly 300,000, people in the United States. Sorry for ranting, I had a lot to say.

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Welcome to Hadit.


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"Does anybody have a suggestion on the best way to appeal this decision?"

Ask for a reconsideration with any evidence they did not consider.

Make sure you mark your calender for the year NOD time limit-in case they dont get to the reconsideration request and the NOD time deadline grows close.

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There are 25 cases at the BVA for this conditon- this case shows how they rate it.

It can cause many problems -as you mentioned:


Thank you for your service-it angers me when the VA has evidencxe like you have and they deliberately ignore it.

Do you have a vet rep or service officer helping with the claim?

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Thank you Berta. I'll check out that link tonight. I have been using the DAV since 2003. For the most part, they have done a pretty good job. They just got me 50% for my PTSD last month. Added to the 60% I already had, it bumped me to 80%. I originally filed in 1993 when I first got out of the military, but was denied and I gave up. My wife got me on the ball in 2003. Thanks again.

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