I have googled, yahoo'd, altavista'd, asked jeeves, and read all the info, which honestly seems to turn up the exact same info, no matter which site you use. So, I thought I would ask which SEARCH site you use to gather info. I am primarily looking for medical info regarding my husband's diagnosis. So, if you don't mind sharing your favorite search site, I would really appreciate it.

Thanks!

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email is moserlara@yahoo.com

Have you tried WEBMD?

I will try to remember to pray for you all. I know there's been a lot going on and now this. I'm so sorry.

Melissa

Have you tried webmd? I also use mamma.com for a a search engine.

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"Never loan your car to someone you have given birth too"

A very dear friend of mine gave me this advice when I was facing a possible health crisis: Do not drive yourself crazy researching. Invariably you will focus on the worst possible scenario and worry yourself to death.

Be very careful in your researching--it can make you worry even more!

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Mental that one, I'm telling you. ---Ron Weasley, "Harry Potter and the Chamber of Secrets"

I use Dogpile.com

For mixed connective tissue disease I think it falls under the Arthritis Foundation Umbrella of diseases I would search there for information, It might also fall un the Lupus Foundation too.

I have Lupus, rheumatoid and fibro plus I have some long convoluted word that means I have no immune system and I am still kicking even after almost dying in Sept 06 from a complication from my lupus, some of these diseases sound horrible and the progrnosis is horrible, but you can live for decades with it because of new medications to help control the symptoms.

Just dont drive yourself crazy researching, Your DH should be referred to a rheumatologist for treatment and he or she can give you the prognosis etc. I think you live in my state, but not sure where, I love my new rheumatologist and would refer her to your DH in a heartbeat but I think you are on the other side fo the state from me.

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~ Christine ~
Grammie to Trinity Lorayne Jean Keens Born June 9, 2011 Loving my awesome guitar picking 100% Country Boy boyfriend Kenny !
RIP Daddy~ 01/24/1930-06/01/2007 I miss you !
Dont Think you Can .. know you can ~ Jeff Hardy

I don't know what state you are in but I would call NIH (National Institute of Health in DC) or email them. They might have information or a study that you could learn more about your husband's problem. I have been in situations twice that family members had something unusual medically that few people knew about. About 18 years ago before google both my kids had mastoiditis. Most medical books had one paragraph on it. Most ear doctors had never seen a case of it. I had 2 children with it. They are fine now but things could have been bad had I not been attentive. Then 2 1/2 ago my dh had viral encephilitis from shingles. After seeing many doctors and being the hospital in a two week period they figured it out. The results could have been bad but he pulled out of it. A year later he had prostate cancer and pulled out of that. Not knowing is worse than knowing.

I usually find WebMD's information to be helpful.

Can I ask how certain they are about this diagnosis? It seems to have come pretty quickly, so I would work as hard as I possibly could to make certain that it's an accurate one. So many of the diseases you mentioned as being integral in his diagnosis are diseases that often go mis-diagnosed for a long time, and so it seems surprising to me that they would hit such a big, comprehensive diagnosis in such a short period of time. Is there a specific test that identifies this that makes them so sure so quickly? Or is this their best guess based on what they see so far?

Our dear friend who has lupus when through a terrible five-year ordeal where she was continually mis-diagnosed. Her first lupus tests came back negative, so they ruled out early on that which turned out to be exactly what she had. It took a re-test five years later to identify it. She ended up on very heavy chemo (I think she took cytoxin) and hasn't had a flare up in years. She is in her 50's, and her symptoms started about 24 years ago.

I have inactive RA, and we have connective tissue issues in our family, so I know how scared you must be, but the advice not to research yourself to death is very good. This spring, one of our children was dx'd with a connective tissue disorder that had fatal implications. After many, many other tests, they decided their initial presumptions weren't right. While he does have a connective tissue problem, it doesn't appear that he is in the dire straits they originally led us to believe.

I know it's much easier said than done, and I know exactly how you're feeling about wanting to know everything you can, and wanting to find the one website that will discuss a hopeful magic bullet, but from my experience, the best thing is to take one day at a time, not presume the worst, and question everything the doctors assume. I have a great respect for doctors, but I also know that the initial presentation of symptoms (and thus the first diagnosis) often lead down a wrong path.

medline MedlinePlus Health Information from the National Library of Medicine

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I think it's good you get a tattoo that reflects your heritage. I'm adopted, so I'm getting one of a recycling bin.

I think it's more about HOW you search than where. You can put + in front of a word to specify it needs to be included in a search, or use OR for either/or, or add - in front of a word (no spaces for the + and -) to show you do NOT want that term included. Phrases put in quotes will be kept together in that order. So . . . .

"native to south america" +mammal -jaguar would give much more specific results than all of those words with nothing else included. Google can find just about anything with the right search terms.

Thank you so much, I didn't know that. I keep turning up some really off the wall results and I am quite certain it is due to the 'way' I am searching. Thanks, I will revise my search technique.

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email is moserlara@yahoo.com

Yes, his initial labs showed a touch of Rhuematoid Arthritis. However, with further detailed labs, he tested highly positive for the particular antibody that this rare autoimmune disease produces.


Yes, this disease actually produces an antibody that is NOT produced in healthy people or in OTHER diseases. At least that's what he was told and seems to be the case in my research thus far.

No, they said with all certainty. That's why the referred him to the specialist as they don't know how to treat it.


Thanks and I do appreciate any input that I get.

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email is moserlara@yahoo.com

I usually search for the medical condition and then "forums"..for example when I had my thyroid issues, I searched for thyroid forums, I found it best to "talk" to people going through it than finding compiled information on the subject.

I also tried yahoo answers once.

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If you really want something in this life, you have to work for it. Now, quiet! The're about to announce the lottery numbers... - Homer Simpson