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cleanergirl Message
17 Jun 2011, 09:32 PM

I am 39 years old and have been having reoccuring hives for the last 11 years. They are painful and leave bruises. I also have a moderate hearing loss in one ear and significant hearing loss in the other. I have knee pain that comes and goes, wrist pain that comes and goes and swelling of the hands and feet that comes and goes. When I get hives (almost weekly it seems) if i dont take prednisone my face also swells. I have been to the allergist, dermatologist, gynecologist and family physician and noone has been able to come to any conclusion. I stumbled upon muckle wells syndrome and thought I have alot of those symptoms. My symptoms didnt start untill my 20's though the day after my 3rd child was born and i dont recall having any regular fever. My father was diagnosed with Lupus 2 years ago and they have tested me for that with a negative result. My question is is MWS something that could occur in your 20's? What are the tests used to determine if you actually have it? I have spent the last 11 years miserable dealing with this and would love to finally have some answers!
lesley1924 Message
18 Jun 2011, 08:00 PM

I am 25 and I know exactly what you're going through! I have very similar symptoms, and I too have been tested negative for lupus multiple times. I do know that lupus is one of those disorders that you can test false negative for, so maybe getting tested a second time wouldn't hurt. I started having symptoms when I turned 21, although thinking back I recall having some minor symptoms growing up but always attributed them to other causes. I have not yet been diagnosed with MWS, but I recently (last week) finally found a doctor that is willing to do genetic testing and believes MWS could be what I have. I do no have any regular fevers either, but almost all other symptoms and then some. I would recommend seeing a rheumatoid arthritis doctor, as they seem to at least know about MWS and CAPS in general, as well as other autoimmune diseases it could be. Anyway, I am by no means an expert on MWS but you seem to have a lot of the same symptoms as me, and MWS is what I've been told I could have by 3 doctors now. I actually went to get a hearing test done a few days ago and was told my hearing is within normal limits which seems impossible because I have a really hard time hearing, but tests don't lie I guess. Good luck and I hope I've helped you in some way! Lesley
nomidalliance Message
27 Jun 2011, 07:25 PM

Dear cleanergirl, There are a few cases of variant CAPS or MWS that have had symptoms start in their 20's, but I think you may also want to look into TRAPS too. Most patients with CAPS do not experience bruising with the rashes, but many with TRAPS can have deep pain that is below where the rash can be, and the rash can migrate. People often have fevers and can have symptom flare ups for weeks, then it can go down. Hearing loss, and knee pain, and weekly flares do make it sound more like MWS or a variant of it may be a possibility. IF you would like more information, please take a look at our website and the downlaodable guidebook about CAPS that has a chart in the center spread that compares a few of these autoinflammatory diseases, including CAPS, TRAPS, FMF and HIDS at this link: If there is anything that we can do for you, please let us know! Lesley, I also hope that you are getting some answers too! I will be out of town for a few weeks in July, but will be checking in on emails. Best of luck! Karen Durrant-The NOMID Alliance
Moss Message
26 Sep 2011, 11:33 AM

Hi Cleanergirl I experienced the symptoms you have plus more and they did not onset till my early 40s and have been diagnosed Bizarre Variant CAPS If I can be of any help, please contact me. Alan