Thanks for that information! That is what I was needing to know about! I am going to talk to my neuro this month about the lip biopsy to see what he thinks about this. That is what the Rheumy told me, that I could still have the syndrome with a negative antibody test, and that this blood test just helps confirm it!
I wondered about Sjogren's because of all of the surface eye problems that I have since the attack. Dry eye and the gland dysfunction. Then I found out that Sjogren's can cause white matter lesions too! But now I am wondering if I do have Sjogren's and it did cause the lesions, why my blood test for the antibodies would be negative. I guess there is still a lot I don't understand about this disorder still!
~Santana~
Hi Santana
My mother, who has Sjogrens, told me that all her blood work came up normal as well. It wasn't until she got the lip biopsy that it showed the DX. I saw on a recent show on Discovery Health called Mystery DX a woman went years trying to find out what was wrong with her and she finally was DX with Sjogrens. The funny part about it was that the doctor who DX her treats her symptoms but also put her on immune suppressant drugs to control her Sjogrens. I told my mother about this because the doctors around here don't control my mother's flar-ups.
Visagal
The Restasis is doing good so far. They stung pretty bad the first time, but no so much anymore. The first time I put them in they also caused a painful sensation that felt like it ran straight back through my eyes, but this didn't last very long , only about 30 seconds.
The blured vision is temporary, so far. After the second day of the drops I had an episode that lasted for about 5 min when my eyes began to burn and tried to water up a little. I noticed this right away,because I haven't had my eyes water in two years and I felt the difference immediately. The swelling in the eye lids looks to have gone down a slight bit, and so far I haven't had any of my pain attacks in my eyes since I started the drops. But it is too soon to tell If they are going to help these symptoms yet!
I will keep you updated!
If you do use the over the counter drops,make sure to use ones that are preservative free because the preservatives can irritate the eyes even more. They are not preservative free unless it says so on the front of the box. I learned this the hard way. I was using the Refresh tears and Gel that was just like the samples that the optho gave me, only to find out a year later that they have the preservatives in them. They were actually making my eye problem worse.
Now I use the Refresh Plus. They come in individual use vials which are more sanitary, with less chance of contamination. They are so much more sensitive to the eyes and do the same job. You can also use these with the Restasis, just wait 15 min after to use them.
Quix,
Well, I don't know if I have Sjogren's since my blood test for the antibodies came back negative, But I do have a lot of the symptoms. The Rheumy said that I could still have the syndrome even with a negative blood test. I supose I will try to get the lip biopsy if that is what needs to be done. The problem is none of my doctors seem to interested in getting this ruled in or out!
My optho put me on the Restasis because I had been on the artificial tears for a year and a half and was still having sevier eye dryness, pain, Meibomian gland dysfunction, blepharitis. He felt that I was having to use these drops too many times a day to try to control it. This is why he aded the Restasis.
He never said that they were an immune supressant, I looked it up myself. He is not too comfortable when the brain damage or immune system is brought up. He acts kind of like he doesn't know about these things and is leaving the neurological issues to my Neuro.
I will tell all of these new findings to my Neuro this month when I go back. I am also going to ask him if he can scan my c-spine and my spine this time as well as the brain. From what I have learned, a lot of these vision problems I have had pluss the neck stiffness, scalp tenderness and transient tingleing in caves and forearms could be from a lesion in the C-spine. I really feel it needs to be looked at to be sure!
~Santana~
I felt that the use of Restasis in you was evidence that the ophtho feels your eye problems are immune related, as in Sjogrens. And yes, they are an immune-supressant used topically.
It's all very interesting, but I can't tell you what it all means. Sorry, Quix
How is the Restasis treatment going so far?
For myself I had my worst epidsode of dryness last night. My mouth, nose and eyes were painfully dry. I also had a reoccurance of my stomach pain associated with my GERD and woke up and had to take some of my previcid prescription. I hadn't needed it for three months. I think I need to buy some eye drop tears today and nasal saline spray.