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Muckle-Wells with no joint symptom

mfupnorth Message
1 Jun 2009, 03:22 AM

My daughter has Muckle-Wells, but has no joint/arthritis symptoms. Would anyone care to discuss their own symptoms?
nomidalliance Message
30 Oct 2009, 05:52 PM

Hi, My son also has no joint damage, but has had joint pains with flares before going on the right medications. My son has a milder form of NOMID, but was lucky not to have the damage. I have posted a detailed post on another discussion forum here, in response to another mom, so please look at the postings for my son's story. I am so sorry I did not find your post months ago. I joined rareshare, but somehow did not get posting updates until this week. I also am the President of The NOMID Alliance, www.nomidalliance.net which is a non-profit dedicated to increasing awareness ,care and treatment for CAPS. I have connected with many patients through our organization, and also on the yahoo nomidsyndrome group and the multiply.com Cold Urticaria Info Island group for CAPS patients. You can find links for these groups on the links page of our website www.nomidalliance.net if you would like to connect with even more people. Feel free to call me anytime at 415-831-8782 Sincerely, Karen Durrant