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#1 | ||
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Junior Member
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Thanks to everyone, but especially you two, pushing me to look further, I may have found out what is wrong with me!
Mastocytosis Here's the web address to the explanation of it if anyone is interested. http://www.aafp.org/afp/990600ap/3047.html |
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#2 | |||
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Wisest Elder Ever
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It would be very interesting if this were the case.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#3 | ||
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Magnate
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don't put all your hopes into this one basket? Tho, I hope it is something readily treatable.
Bodies, as you are continuing to learn, are very complex things? They make computers seem simple and stupid by comparison. Don't you LOOOVE ALL THOSE BIG, FAT WORDS? It does get you an education in doc-speak tho, doesn't it? Keep learning, but I advise you to go slowly...as there is soo much to asorb and digest [pardon any puns here] with all you have to process into sense for you! Docs don't have the self-interest in this all that you have, and never forget that. Hugs and hope and good things and soon! ![]() ![]() |
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#4 | ||
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Junior Member
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don't put all your hopes into this one basket
Lets just say I'm cautiously hopeful! I was convinced it was thyroid before and was proved wrong. What caught my eye and caused me to research more was the comment that after an attack, the person is left feeling lethargic. I've noticed and mentioned to my hubby how the itch comes and goes, lasts anywhere from 1-4 days and when it stops, I'm extremely fatigued. I've been bringing up this itch to the docs and not one has even looked at my skin since 2005. This just seems to tie all my symptoms together. I'm going to get an appointment with a dermatologist soon as they are the ones to diagnose that disorder. I'll keep you posted. |
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#5 | |||
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Wisest Elder Ever
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The incidence of mastocytosis is 1:1000 to 1:8000.
Compare to hemochromatosis and gluten intolerance which is 1:300 or so. The numbers for gluten intolerance have changed radically in the last decade. They may be reported as more rare still in some monographs. The rash seen with gluten intolerance is similar to mastocytosis. http://www.aafp.org/afp/980301ap/pruessn.html gluten intolerance is a significant cause of neuro symptoms, like PN. One may have gluten intolerance and not be a true celiac. It is thought to be acquired during life, with exposure to gluten. There is one study implicating NSAIDs as causative agents in allowing gluten peptides to cross the GI mucosa and begin the allergic responses. Interest and incidence of gluten intolerance has paced the OTC status of NSAIDs and hence their huge use. Hemachromatosis: http://www.aafp.org/afp/20020301/853.html I have only had 2 patients with mastocytosis in 40 yrs. I am very curious as to how this turns out for you. Good luck!
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#6 | ||
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Junior Member
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Looked at both articles you posted. Thanks for the info. My labs for iron are all within normal ranges, so I'm thinking it's not hemachromatosis, and my lesions look nothing like those in celiac's. Here is a link to my actual skin photos: http://dnhatch.tripod.com/skin/
There is a photo of my arm lesions, but they are faded at the moment. I managed to find a photo of urticaria pigmentosa which is posted as well and looks EXACTLY like mine when it's inflamed and is what started me down this path of research. Add all this to the fact that I developed an allergic asthma out of no where about 9-10 years ago. I was sitting in a computer class at college and just all of the sudden, I could hardly breath. My hubby and I were just dating at the time, he came and picked me up and took me to the docs. That's when I found out it was allergic asthma. I had never had asthma in my life prior to that! I've also had a chronic "runny nose" for as long as I can remember. The acid reflux, I've had a problem with it since I was in High School. The skin lesions developed around the same time as the asthma, but the itch wasn't as bad back then. That has progressed over the years. About 4 years ago, is when it started getting bothersome enough to have to take Benadryl at night so the itch wouldn't wake me up. Most often this disorder isn't picked up in labs, at least from what I've read about it. And not sure if it's relevant or not, but my monocytes are always slightly elevated, since 2002, and my basophils (at least the last 2) where at the top: my level 1.0 (ref range 0-1%) during fasting blood labs Sept 08 & Dec 08. Again, I realize I could be way off base, but it does warrent investigation. I know it is rather rare - considered an orphan disease - but my mother has a history of having high histamine levels and I just read something on high histamine that said a quick home test is to take 50 mg. niacin and if you get a flush from such a low dose, you have high histamin. I've never been able to take niacin, since I was a kid - the flush is too uncomfortable. Tried it again in my early 30's and couldn't. I may be wrong, but in the event I'm right, and the potential to have an anaphylactic reaction - I have to get it at the very least ruled out. Thanks again for your valuable input. added info I also have symptoms of what could be an adrenaline response to a histamine release. Sparodic heart palipitations, racing pulse, shakes followed by a headache - these happen together. I've also noticed on the nights I don't have to take Benadryl (no itch) I don't sleep well. My brain seems over active and won't shut down. Excessive histamine can also explain the dips I get in BP. Sometimes my BP is normal ranges 100's over 70's and the neuro ruled out POTS. Last edited by dmouse; 02-08-2009 at 10:51 AM. Reason: adding info |
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