I most clearly have MS, AND secondary sjoghrens. I also have a glioma in my right front lobe. So, since I have been having migraines for years...I guess its all of the above.

The glioma hasnt grown, moved, or changed in 2 years that we have been watching it. I have traced back MRIs to 2002, and it was there! NOT ONE of those bullies that told me I was over reacting noticed the darn thing! just skipped on by it.

My worst sjoghrens is dry eyes. I have punctal plugs in the lower lids and OH what a change! not completely better, but I no longer feel like my eye lid is made of sand paper, and scratching my eyeball out of my head when I blink. Since starting copaxone I have stopped collecting lesions, and the ones I do have are smaller, and appear to be healing.

My attitude is the biggest change. I have stopped living my life as if death is around every corner. Horrible debilitating illness and crippling disease. Today, I climb out of bed, and get going. I am doing my best to ignore my nagging lil snotty daemon voice that says "you dont feel good, get back in bed." I am walking again, sewing again, and doing more things to fill MY cup, instead of focusing so hard on others. then I have to recenter that daemon in the afternoon when its time to take a break, and relax. stop pushing myself to the point of exhaustion. its OK to take a break! so, this learning journey has me learning about ME, and what I need to be a good person to myself.

I hope you get the answers you seek.

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. :hug: 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

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

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

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.

Oh thanks for those tips Dejibo. I take RX philocarpine which creates SALIVA.. heavenly...works right away.

I will look up that Sjogrens site and try your tips.
I used to be on a forum for Sjogren's..nice people..but like it here the best..Then I did not have a Sjo DX so I stopped going. I may check in with them again..they were very supportive.

Best to you my dear

Jan

Hey Jan--very glad to hear that you've found a doctor who seems to be taking all of your problems into good consideration. I hope he can help your symptoms and help you get answers.

Best of luck!!

Nancy T.