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Help with symptoms

Tinybird
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I don't know if anyone has had similar problems, but my brother is now showing signs of an unknown allergic reaction. His lips, eyes, and extremities are swelling. He has treated himself with benidryl and even been given epinepherin. These help for a short period and then more swelling. He has cut out all sorts of items from his diet to try and find the problem, but nothing has helped. We have a long line of autoimmune problems...does this sound familiar to anyone? Dr.'s are baffled. Any ideas would be greatly appreciated. If he can go to his Dr. armed with any additional information it would be a blessing! Thanks, Tinybird

Explore topics in this discussion:

Pain Goiter Anaphylaxis Allergies Mastocytosis

10 replies

caringcounterparts

I looked up the symptoms you described, and found a couple articles that may help...

This gives a list of possible allergens to explore when you have "angioedema" (hives underneath the skin) either because of an allergy or an inherited condition.

http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=25&PrintPa ge=1

There is an autoimmune condition called "chronic urticaria" where this symptom occurs repeatedly. ("caused by the formation of autoantibodies to either IgE or the IgE receptor on mast cells"). This is an article for purchase with in-depth, doctor level information about chronic urticaria. If you would like it, I can email it to you at no cost (courtesy of www.uptodate.com).

http://www.utdol.com/utd/content/topic.do?topicKey=urticari/4546

Barb at www.aininc.org is an excellent resource about all autoimmune conditions.

Hope this helps... please let us know what you find out!

Ellen
www.caringcounterparts.com

Sharon

Tinybird,
Your brothers situation sounds a little to much like mine, but then you do only give a short paragraph. Take a look at tmsforacure.org . It is the website for systemic mastocytosis and other mast cell related disorders.
Mast cell disorders take a long time to diagnose and treatment is difficult - but if it is the case, the Doc's will eventually find it and offer some treatments that can make life a little less difficult for him.
This is how I see my systemic mastocytosis - I react to known triggers, some of them bizzare (like I react to cardboard and polyester - to the touch), I react to many foods, many environmental allergens, and sometimes we never figure out what I reacted to. It is as if my body has taken up anaphylaxis as a hobby.
It takes some knowledgable Doc's and a lot of effort to get this one under control. I am hoping that this is not what your brother is having, but it sounds a little familiar so - you may want to take a look at the web site and see how it relates to your brother's situation.
All the best to you,
Sharon

Tinybird

Thank you for this information. I will pass it on to my brother and get back to you with an update. It is my fear that he will end up with a rare autoimmune disease just like I have. It is so rampant in our family. Again, Thank you and I will post update soon!

screamer

I meant to tell you about the LEAP program for alergies for food and chemicals in food. I am allergic to tomatoes, chicken, lemon, and all sorts of things that the scratch test does not show. If I eat those foods I have more pain, more stomach and digestion problems. It is a specialized blood test and they tesst for about 200 things. My stomach does not hurt constantly anymore but I sure miss tomato.
jeni

screamer

Cushings Disease. Does he look puffy and is he starved all the time feeling hungry? Losing some muscle strength?

screamer

Hyperthyroid is another thing to test to explain the eye swelling. Goiter is another name for it.

Tinybird

Thanks for your suggestions. I don't know what was happening to him...but all his symtoms seem to have disapeared. He's doing well now. Best wishes,

Tinybird

screamer

Yeah. I hope he stays that way. HOw are you doing with the sps? I have lymes disease chronic is my latest diagnosis.
jeni

sharlene1_n

yeah in my family something is happening too all of us have allergic reactions to foods and other things. my second oldestno longer experiences symptoms . and my youngest doesnt carry an epipen but gets bad allergic reactions[ not anaphylactic ] but the rest of us are a mess with all the symptoms of systemic mastocytosis. im going to push for testing. ive always been too afraid too complain as docs always poohpooh your symptoms and you dont want to sound like a hypocondriac . however im done being afraid . my children have spent too many years in pain and recently i decided if the doc doesnt respect me and i have pushed , then ill find one who does care and is willing to look outside the box.ive developed a backbone .my family is tired of being afraid of me dying and i cant watch them in fear like that. i was so ready to concede to death without a strong fight and after watching mystery diagnosis on tv im pushing back without regard. i hope you all can gather that strength too.

Tinybird

Sharlene, Absolutely push until you get what you need. My brother's symptoms have just disappeared. We have no idea what happened to him. But he is grateful that he no longer has to deal with the attacks. That makes your problem no less important to this conversation. I have delt with enough uncaring doctors in my battle with my autoimmune problems. Start with your primary care doctor and if he cannot help, get a specialist involved. Don't stick with just allergists...you never know who will be the specialist that finally listens to you and orders the right test. I found that blood tests are more accurate for my allergies. I am allergic to many foods that I had no idea were problems until recently. Don't give up. You deserve to be treated with compassion and respect. I will be thinking of you. Please let me know how things go. God Bless You!!

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