Actresses Diagnoses of Lupus..People Magazine

[gurs]

I saw actress Kristen Johnston on Good Morning America the other day, and thought a lot of you would be interested in this and her lupus diagnoses.
There is also the article in People Magazine this week (Jessica Simpson) on the cover. Very Interesting how it took 15 doctors to
diagnose her...makes me really wonder if we are getting all the proper diagnoses ourselves. Many of us have so many different things
going on as well. That is why going to several, several doctors is almost a must. The problem is, some of them all say something different, so then what? glad she is in remission.

http://www.people.com/article/kristen-johnston-lupus-myelitis-interview-3rd-rock-from-the-sun-the-exes

Gursie

[lighthouse33]

What I found interesting in the link was that she was finally diagnosed by Daniel J. Wallace, the rheumatologist who wrote both The Sjogren's Book and the Lupus Book.

I think I saw this issue of People yesterday at the grocery store, wish I would have picked it up, because I'd love to read the entire article.  It will probably be gone by next Sunday.

[LucyD]

For some reason, this made me feel better, but not because someone else has and AI disease. I think it is because my 35 year old daughter seems to want to be in denial about my diagnosis with Sjogren's and mixed connective tissue disease, discounts my fatigue, and I sometimes get the feeling she thinks I am just lazy or it is because I am getting "old." I want to send her the link. She often acts annoyed with my fatigue even though I try to hide it and plow through.
I am glad she got help when she did

[Joe S.]

I hope she finds help and support from others. One gal in northern MN is having doctor rewrite treatment protocol at U of Mn hospital with the success she is having with CAM therapies. She has beat the 5 year death sentence by 10 years with my last contact.

[gurs]

I guess she went through 2 weeks of constant testing at Mayo, they found nothing. Soon as she met with Dr. Wallace and he saw her and her labs, he knew right away..just takes 1 doctor, that is why it is so important for us to keep trying to find the one that who can help. She said she had chemo, steroids, and IVIG for 6 months and is now in remission..lucky her. Look at how many of us have had this and suffered for years, years, years. Wish I could go see Dr. Wallace..sure he is impossible to get into though..

Gursie

[LucyD]

Gursie, agree with you, it would be wonderful if every one of us could find the best doctor of us who could decipher all of the tests and symptoms and figure out exactly what would work for us. Yes, Dr. Wallace sounds terrific. Isn't it sad though, that with all he knows, they still don't really completely "understand" these diseases??

[gurs]

I wish I could go see Dr. Wallace, #1..too sick to travel, #2...too expensive to travel....very sad that these docs have no idea about how to diagnose and fix us....what are we supposed to do? it also goes to show that sometimes the best hospitals may not have the answers too. Your local Rheumy may be more knowledgeable and be able to help you more. I went all the way to Hopkins years ago and was not impressed with the top doc there. He told me to get more sleep??? HA!

Gursie

[LucyD]

Gursie, what you say is true. I think I am fortunate with the rheumy I have. I am only about 45 minutes from Hopkins. But, I am not so sure any of the "big" hospitals hold the best in the the field. I do go up there to see an ENT doc and have had two sinus surgeries up there. Good diagnosticians are rare these days. Physicians are now trained by rote, they are not taught to "think." It is a gift, an art, a skill that is fading. They no longer LISTEN to their patients. They pay more attention to the test results. And test results don't have all of the answers. I know I am preaching to the choir. I understand. I don't have the time, money, or energy to travel to see Dr. Wallace, and like you said - could we even get in?

[Joe S.]

I agree with LucyD and  would like to add that currently there is no"fix"  for people with AI diseases. The best we can do is manage until there is something better. I do not believe that most medical researchers are even looking in the correct place to find a treatment for AI diseases. Heck, Mayo trained doctors do not believe AI diseases even exist.

On another note, I wonder if Dr Wallace is the author of "Dead Doctors Don't Lie".

[P.Trish]

A little over a year ago, I was visiting my excellent rheumo (in Southern Cal) when my husband noticed that Dr Wallace was located on the floor above us. My husband was determined that I make an appt with Wallace, but I was very hesitant to 'make waves' with my current dr.

A few weeks later, we were sent a notice that my current rheumo was becoming a partner with Dr Wallace! My rheumo is about 20 yrs younger than Wallace.

I have not met the busy Dr Wallace, but occasionally I see him strolling through the office. The space that the two drs share is very small, but there is a large adjacent infusion center.

Anyway, I definitely am sticking with my current rheumy and will share if he comes up with anything new for us, especially since they are both researchers. I do know that they both stress the importance of clean eating.

A Sjogrens center is also in the works in Los Angeles (headed by these two doctors).

I hope ya'll are having a good Thursday.

Tricia

[justjudy]

Tricia,

I was thinking about trying to make an appointment with Wallace.  I live in the South Bay, and my Primary Dr. is in Santa Monica (Functional Medicine), but I have not done so yet.  I am currently on weekly IV vitamin and Glutathione infusions, and am focusing on cleaning up my diet (no sugar, no gluten or grains).  I am doing okay and am back to exercising (spin class, pilates, etc), and am not sure there is much more to do.  What do you think?  I am new to this and feel like, for me, my diet is the primary driver of my symptoms.

[P.Trish]

justjudy,  I say 'go for it! Call Dr Wallace and if you can't get in, call my dr., since they are partners.  I will PM you the info, if you like. I live 2 hours from L.A.but it has been worth it.

I am in what I call the 'management' stage: between my rheumo and the wisdom & info gleaned from this site, I feel hope - still on the roller coaster, but more confidence on how to handle symptons.

And yes, I believe whole heartedly that while eating clean is not a cure-all it definitely affects us in a positive way.

Tricia

[justjudy]

Thanks Trish! I think I will try to get an appointment.  If you can, please message me your Dr.'s name.

Thanks!