Mystery Diagnosis Episode

Mystery Diagnosis Episode

Postby pam501gal » Sat Sep 18, 2010 10:21 pm

Mystery Diagnosis recently filmed our family and shared our story. We are hoping that other sufferers of mrh will catch the show and contact us. Unfortunately, our website wasn't listed during the episode or in the credits :(. Hopefully this information will be listed on their website as promised. We're still waiting for a copy of the episode (along with all of the volunteers). If you'd like to view it, the show is on the Discovery Health Channel and the episode is The Girl with no Bowel. We're the second story. If you catch it, please share your thoughts. Stay healthy and keep in touch :).
pam501gal
 
Posts: 27
Joined: Wed Mar 12, 2008 10:06 pm
Location: medfield, ma

Re: Mystery Diagnosis Episode

Postby bfowler » Fri Oct 14, 2011 4:22 pm

Last night I happened to accidentally catch this program which shared your story and what you went through. Unfortunately, I missed the beginning of the story and I am hoping to catch it again another time. I found it to be so interesting because I know that MRH only normally affects men half as many times as women, but when I was watching your story, I couldn't help but say out loud that I felt like you were portraying my husband's recent problems. He also started having this severe hand pain and then could no longer grip or pick things up as his fingers would only open or close to a certain degree. The hands are not only painful to use, but also to touch. The doctor said he thought he was suffering from Depuytran's Contracture, but soon after the hand symptoms, he started having serious trouble with his knees and he could no longer bend down on his knees and they too were painful and seemed to feel swollen all the time. Now our doctor is rethinking his original diagnosis and doesn't quite know what to think. Is there any test that positively shows if it is this actual disease or is it trial and error? We are still visiting doctor after doctor, but thus far no one diagnosis has come to be identified. Is there a site you may recommend that tells me more about this? I'm desperate to find something that may help my husband.
bfowler
 
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Joined: Fri Oct 14, 2011 3:20 pm

Re: Mystery Diagnosis Episode

Postby pam501gal » Fri Oct 28, 2011 8:46 pm

bfowler - I just noticed your email. My husband controls this website and your comment was waiting for approval - we have to do this due to the level of spam that we receive.
There isn't a single test to diagnose MRH. If you have any nodules (small bumps), one of them could be biopsied by a dermatologist and sent to a lab (mention that they should look for multicentric reticulohistiocytosis). I tested negative for many things - rheumatoid arthritis, lupus, sarcoid, etc... With your husband's symptoms, he should see a rheumatologist. They could xray his hands - MRH attacks the first joint - closest to the nail. This is another way to diagnose it. I am in contact with two older males who have MRH. One is in Idaho and one is in Australia. A group of us communicate via Facebook.
pam501gal
 
Posts: 27
Joined: Wed Mar 12, 2008 10:06 pm
Location: medfield, ma


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