Friday, April 06, 2007

I wasn't begging for spam

Dear doctor-writer man:

Maybe my posts have given you the false impression that I am so sick, so lonely, that I would appreciate receiving your ad via comment ON EVERY POST I HAVE EVER MADE ON THIS SITE. I wasn't using my inside voice. Sorry.

See, I can imagine you pimping your book once on my blog - whatever- but flooding it means that you aren't A) reading my posts and B) you are trying to annoy me.

I can find annoying things in my life all on my own. Thanks though.

Go away.

Sincerely,

The Sjogirl

4 comments:

Stu said...

maybe you can send him this poster: http://www.fortliberty.org/patriotic-humor/patriotic-pictures/how-about-a-nice-cup-of-shut-the-fuck-up.jpg

Glad to hear you are feeling better and your toes remember you.

-Stu

Anonymous said...

People who are undiagnosed and sick are definitely sick, I don't question that. There are over one hundred auto immune illnesses alone, and also literally hundreds of causes of dry eyes and dry mouth when prescription medicines are included in the causes. It is the responsibility of people who are sick to get diagnosed within a hostile medical establishment.

People who get tested for everything there is, and I doubt anyone has really ever been tested for everything there is, are diagnosed with Chronic Fatigue Syndrome. Why is that - that is because Chronic Fatigue Syndrome has been chosen by the medical establishment to be the final garbage can we get thrown in if we are sick and a cause cannot be found. It is diagnosed by exclusion of everything else that can be tested for. It is a diagnosis of exclusion.

If a person is seronegative for Sjogren's, and either has no lip biopsy, or else a negative lip biopsy, then they simply do not have Sjogren's. They have tested negative for it. Both Dr. Birnbaum and Dr. Vivino have spoken on this.

Dr. Birnbaum says that the approxiamtely 30 to 40 percent of patients who are seronegative for Sjogren's but have symptoms of it, NEED ADDITIONAL TESTING INCLUDING A LIP BIOPSY. That 30 percent figure for seronegative Sjogren's comes from the misquoting of Dr. Birnbaum I believe, or else what is the official reference for your statement that about 30 percent of people who have Sjogren's are seronegative. These are the 30 percent who diagnosed themselves. Venus Williams does not have SJogren's either, which makes a travesty of both her and the Sjogren's Foundation. The Sjogren's Foundation book, The SJogren's Book, has criteria for the diagnosis of Sjogren's that require either positive bloodwork, or a positive lip biopsy, and while the book says that that American College of Rheumatology 2012 Crieteria for the Diagnosis of SJogren's, that F. Vivino was a co-author on, are Research Criteria, elsewhere in the 2012 collection of papers that the book cites, but didn't fully include, it says that these are NOT just research criteria, and with the increasing use of dangerous immuno suppresive and biologic drugs, that the 2012 ACR diagnostic criteria are meant to be used in clinical practice.

If Dr. Wallce had thought people would mistakenly think that the 2012 ACR Criteria for the Diagnosis of Sjogren's were just for Research, he would have made it clear that they were also to be used in clinical practice as it states in the full text of the papers that that table in The Sjogren's Book was reprinted from. That full text, co-authored by Dr. Vivino, is on line.

You are spreading mis-information and mis-guiding people in your erroneous post on Seronegative for Dummies. I will not spam you, although I posted you two messages today. I just want you to know that you are wrong. I struggled to get diagnosed, in agony, frantic, for four years, and now that i am diagnosed with Sjogren's I am so sick I want to die from it. Why do people who tesst negative for Sjogren's chose SJogren's and not anything else? Seronegative Lupus, or Seronegative Leukemia would explain their diverse symptoms just as well. If you are going to make up a diagnosis, why choose Sjogren's of all things - it doesn't make sense.

Please stop posting this nonsense about people who do not have Sjogren's, having that different, other, illness called "seronegative sjogren's" that does not exist. True "seronegative Sjogren's" has a positive lip biopsy, but negative bloodwork for SSA or SSB, and nothing else.

Anonymous said...

I put this on an ancient post of yours so no one else would see it. I hope you will get notified of it and read it because it is a reply and I think that the blogging software notifies you.

Don't worry about me, I will not spam you or anything. Please calmly think about what I am saying.

You must realize that, with no lab evidence that a person has Sjogren's, and only a collection of symptoms, that a person could potentially, or likely, probably, has something else wrong with them and not Sjogren's? A few of them might not even have anything wrong with them, but I do believe that most are sick, and some are very sick. These people need further testing and a correct diagnosis.

Anonymous said...

Lisa, hello again weeks later,

I just read all of your current blog posts and most of the comments.

The current posts on this blog are pretty clean regarding promotion of the fake "seronegative Sjogren's" diagnosis, as was discussed in my previous two comments on this page. I really meant them just for you, but you let them be posted which I hope will help people understand both what Sjogren's actually is, and why the vast majority of Rheumatologists in the USA don't recognize a diagnosis of Sjogren's with negative bloodwork and either no lip biopsy or else a negative lip biopsy.

You are obviously an excellent writer/blogger and I am so sorry that you are suffering from illness. Thank you for not promoting the fake "seronegative Sjogren's" diagnosis in your blog.