Thursday, October 11, 2007

Rare disease

Thank you for your reply. Red spots on right side of tongue started a month ago, it is not so red now but looks like papillae (along the right side of tongue), but there is a numbness/metallic taste there especially after a meal. I had the same feeling before when I first had 3-4 nodules (red) which docs removed last year and diagnosed as mucosal neuroma and later was diagnosed as inflamed pappilitis by 3 other pathologist, after 2 months later there were also a few nodules, which was removed and diagnosed as inflamed pappilitis. Now there is no nodules, only non significant red spots. After the removal surgery,I also had this numbness at the scar tissue area especially after a meal and will go away after an hour, docs says because of nerves being removed, it could cause this problem, but it doesnt spread to the area where the red spots is. But since these red spots appear a month ago, I seems to get this sort of numbness and metallic taste espcially after meal, it takes a few hours to go away.I have been to 2 maxilofacial docs and ent docs, all of them says it doesnt looks cancerous, some says it is pigmentation, some says blood capillaries, some says odema (swollen) pappilae, some says foliate pappilae, my maxilofacilal doctor specialised in oral medicine keep asking me to take amyitripline (an antipressant) for the burning mouth that I have (on palate and part of tongue).Docs dont think I had mucosal neuroma because it is rare (associated with MEN Type III) .He keep saying I am depressed. Have tried taking 10 mg amyitripline every night for 1 month but no effect, but makes me feel like a zombie the next morning. Stop medication. Another naturapathy docs says I have too much acid in my blood (prone to cancer)and put me on some calcium oxide and herbal treatment and not to take any medication because medication is acidic. But after 2 weeks ulcers came out and spots looks more significant, stop his herbal medication which he says is healing process and part of detoxification. My Ent docs says sometimes when pathologist diagnosed and found inflammation of tongue they will just indicate as foliate pappilitis becaue it is non specific. As long as it is not malignant, they just give it a name as inflammation. Some docs says maglinancy dont appear immediately and there will be changes and takes time before it became cancerous, specially in the tongue. It can be very tricky to diagnose. Even a lot of docs says since biopsies on both sides also do not indicate any maglinancy, I shouldnt think of getting cancer, if I had cancer it would have appear now!(It is already a year, went thro 2 endocrine test, 1 in Oct 06 and another in June this year, all endocrine test for cancer negative. So docs dont think what was remove was mucosal neuroma but inflammation. They says the two biopsies was quite big 2 cm each, any maglinancy would have been detected.But why am I having all this discomfort (burnign mouth and numbness metallic taste) and what are the red spots? I thank you for being very helpful but I really dont know what is happening to my tongue and mouth and dont know how to get rid of the burning mouth and red spots numbness.Pls help, and appreciate any reference to anybody who has similar problem. I am a very anxious person and suffers from anxiety for more than 10 years. Some docs says anxiety can cause a lot of sickness even cancer (as cancer is a disease of the mind). Anxiety actually brings down out immunity system. Look forward to your reply.Thank you.ALow(waifun333@yahoo.com)

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