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magistramarla
03-22-2010, 07:33 PM
To everyone who has Sjogren's as an overlap or just has questions,
I'm going to the conference in San Francisco in a couple of weeks. BonusMom will be there, too.
I know that I'm going with a list of questions, and I thought that some of you might want to add your own. So, if you have some questions that you would like for me to ask the "experts" at the conference, please post them here. I'll print them out, and then I'll report back on the answers that I get.
Let the questions begin.......
Marla

wrightrs
03-23-2010, 10:35 AM
Hope you get a lot of you questions answered. I think I have this but not dx yet.

Saysusie
03-23-2010, 01:14 PM
Hubby and I are still trying to work out a trip up north during that time period 'cuz I'd like to attend. I'll keep you posted!
If not, please share your information with us when you return!!:yes:

Peace and Blessings
Namaste
Saysusie

Grime
03-23-2010, 01:18 PM
Marla,
Do me a favor an ask them if any of the auto-immune diseases can open the door for cancer. I have to be in SA tomorrow for a dyed cat scan to pinpoint the cancer. They'll do surgery next week if they see that they can remove it. Don't know the next course of treatment.

mountaindreamer
03-23-2010, 03:59 PM
hi marla,

thank you so very much for starting this thread. I could not think of any questions for you, and i realized that i am very uneducated about sjogren's disease. It appears to be one of the things that we just accept about lupus.....what a shame. I am interested in learning everything that you can share with us. I am interested in the level of damage that sjogren's can do, is it progressive or will it continue to just be a nuisance forever. So much that i don't know.

I know that you and bonusmom will have a wonderful time together. I remember when aggasgirl (leslie) and i met....it was like meeting a long-lost sister.

magistramarla
03-23-2010, 04:04 PM
Marla,
Do me a favor an ask them if any of the auto-immune diseases can open the door for cancer. I have to be in SA tomorrow for a dyed cat scan to pinpoint the cancer. They'll do surgery next week if they see that they can remove it. Don't know the next course of treatment.

Consider it done, David.
I hope that the VA can treat that cancer for you and get you back to sailing. As soon as you can, update us about how it goes.
Gentle Hugs,
Marla

magistramarla
03-23-2010, 04:14 PM
Phyllis,
Like you, I just thought of it as a nuisance, causing dry eyes and mouth. When I looked up the information about it, I learned that it can cause much, much more. A big one for me is that peripheral neuropathy is a symptom that is common in Sjogren's. No doc has been able to figure out my numb feet and toes, so I think that it could be the SJS. I certainly did test positive on the SSA and SSB antibodies.
I've also read that the neurological manifestations of SJS can be confused with MS. I recently saw a new neurologist, and he's testing me for MS, which the docs in Texas ruled out 3 years ago. I seem to be a mystery diagnosis patient for them. That's why I can't wait to ask questions at the conference.
I know what you mean about meeting someone from WHL. It will be like meeting an old friend that I've never laid eyes on before.
We'll report back on everything.
Hugs,
Marla

mountaindreamer
03-23-2010, 04:31 PM
thanks marla,

i just read your post about the website, so i am going there to start the learning process. I have never been a person to just accept what someone says...i have always been inquisitive. Now, i get a little down on myself when i am reminded of the things that i just let slide by.

magistramarla
03-23-2010, 04:36 PM
Hubby and I are still trying to work out a trip up north during that time period 'cuz I'd like to attend. I'll keep you posted!
If not, please share your information with us when you return!!:yes:

Peace and Blessings
Namaste
Saysusie

Saysusie,
It would be so great if you can come! I'll keep my fingers crossed and hope that we can all meet up. Jeff will be there to pick me up on Saturday, and it would be such fun for any of us from WHL to all get together after the last speaker.
Hugs,
Marla