Thanks for your response..but I am curious. What did you end up being diagnosed?? Hope you are doing ok..coping.. and all.

Warmly, Jan

For all you have posted..Sally,, Cherie.. and Frank.. and all the rest..thanks a lot!!

For a long time I have not felt there was a forum where I truly belonged..as I could not relate..but what I could do is ENCOURAGE and support as you all do.

I mean it.. I need you too. This has been a very long journey.. and I lost my husband along the way.

But know this..YOU are not alone.
I will be there for you as well. Best to you !!

Jan

hi jan,

i'm so very glad to hear that you've found a kind and knowledgeable dr.
i hope with all the dx that he can help you to feel better and decrease your sx's.

Jan,
I'm happy to hear you've gotten some answers. You definitely deserve them, as does everyone,and you were so patient. I know it's not easy and I gotta commend you for hanging in there and being your own best advocate. I really hope they can treat you and help you to feel better. Don't forget, we're here for you too!

So glad u finally found a dr that would listen.

I have dysautonomia also known as autonomic nervous system dysfunction as well as MS. I have been a guinea pig in Vanderbuilt University lab.

Good luck there are many reatment possibilities so if first drugs dont help keep trying

Bestof luck
laurie f

Thanks Laurie for responding. So YOU have Sjogrens. I know what you mean.. I cannot sleep as my eyelids get soo sore.. even after I just take the Restasis before bed. I think its gravity and laying on my back.
I usually dont get too bad during the daytime..but I have DRY MOUTH and take a pill for producing saliva..do you?

ANd.. I have such dry ears..that one in particular gets infected so bad.. the canal swells shut and they have to put a stint in it to get the ear drop antibiotics inside my ear.

Just having a doctor that will try to find some one answer means more than I realized. The worst for me are these dizzy..spacey headaches that affect my VISION and SPEECH. I can fake a lot..but not seeing.

Keep in touch my dear Laurie ok?

Warmly, Jan

OOPS.. meant that LAST response for Dejibo.. Who said I was computer literate.. DUH

I kinda figured.

My eyes are HORRIBLE! I wake in the middle of the night, and my eyes are glued shut! I cant even open them. they are not crusted over, its just that there is NO moisture to be able to even open them. My MD reccomended that I use baby shampoo, the no tears stuff, and make a solution of 10% baby shampoo, and 90% water. I use that mix on a thick wash cloth to wash my eye lids, eye brows, and lash line BEFORE bed. I then put on some FML ointment, or over the counter eye ointment, and go to sleep. This breaks up the dead crusts that happen ontop of the oil glands, stimulates them to release more oil, and brings blood flow to the area. its really helpful.

I suck on candy, lozengers, or chew gum. It keeps my mouth moist. I try to keep hydrated and it helps my sinus flow stay thinner, and easier to swallow or cough past. Always clearing my throat, I just thought it was something I had to live with, but was told its because my sinus drainage is so thick from lack of moisture.

go to Sjogrens.com and sign up for the moisture seekers newsletter, and stuff. I also got those eye pads or goggles that have moist packs, with heat/ice discs in them. VERY Soothing! They have a great website.

I am glad you found some answers.

Thanks Laurie for you support..it means a lot.

So YOU would understand and could help me with dsyautonomia. How can you tell the difference between the 2 disorders?? Do you have one neuro for both??

I would love to hear of what you are been through.. experienced..survived.

Please feel free to PM me ok?

Warmly Jan

Thanks.. your support is greatly valued..You seem so familiar to me..

This forum.. or rather YOU guys.. mean the most to me.

Warmly, Jan