I am so disappointed with WebMD!!!

[Go Bucks]

After watching the House episode last night I went online and looked around to see if there were any reviews about the show.  I found a WebMD blog write up called "TV Checkup".  Dr. Lloyd was the doctor who did the write up and man was he WAY OFF BASE!!!!  I cannot believe that he would write such a massive generalization about SS.  We have a hard enough time as it is to get respect about this and he just discounts it.  As an opthamologist you would think he would be a little more understanding....he did get one point right....we sjogries can still cry but man does it hurt afterward.  Anyway, I attached the link, if you dont agree with what he says, post a comment to their website and let him know!
Cheers!

http://blogs.webmd.com/tv-checkup/

[pudmott]

I just read what this "doctor" had to say and have added my two cents. It scary to think that so called experts have these opinions


Pud

[Scottietottie]

Hmmmph - I've commented too. 

[Linda196]

I commented, too. Maybe we can actually sway this "doctor" through sheer volume of replies! If nothing else, we can let his readers know that there is another point of view.

[susanep]

I had my long comment all written out , hit the button, then realized I am not a registered member. You folks are correct though about how light they are making of sjogren's.

susanep

[Epson]

Ah, it's the internet, you have to go see a real doctor and as we all know, even the real doctors that you pay real money to see, don't always know too much about Sjogren's.  At least the bad information on the net is free.  Who knows if this guy on the web is a real doctor or even an expert in his field.

I mean I know more about Sjogren's then most doctors and I'm an idiot

[pudmott]

I wouldn't call you an idiot epson. Quite smart i think


Pud

[Patze]

Hi my toothy friend!

If you think you're an idiot, some of the rest of us have no hope then!

Take care -

Patze

[pudmott]

"Dr" Lloyd posted a reply folks. it was interesting


Pud

[Linda196]

He seems to be thriving on attention! Lesson one, "if you want attention, do something totally outrageous or ridiculous"...he's doing it right!

His defense sounds a lot like "don't read what I wrote, read what I meant!"

[Jesse88]

I replied too and gave him a piece of my mind (the part that's left, even though I can't spare it, LOL).  He can't possibly argue convincingly with people who actually have the disease, so he has to try and cover up his lack of knowledge.  Guess we showed him!   

[Katybarstool]

Hi Guys

Where do I see your comments on the WebMD site?

Kathyx

[lady nova]

Hey Everyone,


   After I read that blog, I had to vent too!!! I didn't even see the show that night, but OMG when I read this moron's comments. I was even more pissed off in his reply, so guess what boys and girls of the Sjogren's Family, I let the b****** have it!  In fact, I'm going to post it here and see what you guys think. Please let me know, I'm just curious.


Love,


Lady Nova ... Enjoy!


Dear Dr. Lloyd,


I am still a little perturbed by your response. I still think you need to refresh your memory regarding the diagnosis of Sjogren's Syndrome. First of all, not all physicians that diagnose Sjogren's do a lip biopsy because of the negative side-effects of having a lip biopsy.

For example, it can result in permanent nerve damage in the surrounding area, which is rather disconcerting to a patient that turns out not to have Sjogren's and a patient that does have Sjogren's it is another annoyance.

Secondly, you forgot to mention that there are various blood tests done that also determine whether or not someone has Sjogren's. Also, there is a form of Sjogren's that is induced by use of medications that cause dry mouth etc.

Thirdly, not to burst your bubble about Sjogren's being associated with other autoimmune diseases, but also Sjogren's Syndrome can cause similar joint and muscle pain present in patients with RA! HOWEVER!!!! the big difference is that it does not cause joint damage like that of patients with RA.

Fourthly, there are also other autoimmune diseases like Lupus that SHARE similar symptoms that of Sjoren's.

Fifthly, perhaps the patient portrayed on House was in remission from joint pain associated with Sjogren's and was just enjoying a little fun while she could. I've got news for you Doc, sometimes certain symptoms can be in something called "Remission" while other symptoms are still quite active. So those of us whom are chronically sick when we are having a good day, we try to enjoy it while we have it... because tomorrow might be very different!


Also, Sjogren's DOES NOT JUST create problems in the eyes or mouth, it creates problems in ANY MUCOSAL lining. Obviously doctor, you don't have a vagina because guess what!!!! That can get dry too with women that have Sjogren's Syndrome, and you have to put good ol' KY Jelly to use in other ways.


Sixthly, another lovely symptoms of having an autoimmune disease is having issues with one's memory. So it isn't just a lack of bodily fluids in the eyes and mouth.

Seventhly, Sjogren's Syndrome does NOT effect everyone that has the disease in the same way!


And finally, to put an end to my rant, I think most intelligent people realize the difference between television and reality. It can take YEARS and YEARS to diagnose autoimmune diseases. Unless the person has screaming obvious symptoms that even a monkey could figure out, it is a very difficult diagnosis to make.

I think Fox would probably lose viewers if they actually portrayed a realistic presentation of how one is diagnosed with an autoimmune disease because it would take SOOOOOOOO long, that it would be like the soap opera that would never end.


Also, I think it would put an end to Dr. House's reputation as a great diagnostician. AND he would go and change his mind about said diagnosis from one episode to the next.

That my dear doctor is the REALITY of an autoimmune disease!!!! I'm sorry that you had to reduce it into simple terms, but I highly doubt that you will EVER know what it is like to live with one or more of them. I can tell you that you would NOT have made it through college or medical school for that matter if you lived with what a Sjogren's Syndrome patient with the worst dry-eye etc... lives with on a day to day basis because it is soooooooo excruciatingly painful!!!!

[Jesse88]

Katy, Go Bucks has a link in her post.  You'll find all our comments there.  Look for the "Comments" link at the bottom of the doctor's review.

Lady, you really set the doc straight! 

[paperdoll]

You go GAL!

My dad suggested I call Dr. Dean Edell about Sjogren's in say July 2008...
He is older and didn't really believe what I told him.
So my dad offered me $50 to call so dad could hear LIVE what that Dr. would say! 

I was one the line for an hour and I was the last caller taken...
The first thing I mentioned was pain and chronic fatigue, that I had a Positive Lip Biopsy and RA blood test...
and he went just into eyes and mouth and vagina... and the need I'll have for moisturizers... 
He was very fast and didn't let me get in 2 sentences...

Sooo....
I was disappointed - but I am glad I got some awareness out there!

RIGHT?



I can't wait to share your comment to Dr. Lloyd with my friends and family!