Groundhog Day | Arthritis Information

My Sjorgrens is not so bad today. Especially scince I took my Singulair the last two nights. Normally that counteracts my pilocarpin and you can not even tell I took it. So this is bigger than big.

My Sjorgrens has been really bad for a long time. I had to change and rearange some of my meds because I was getting abcessed teeth from lack of saliva. Hardly a tear in sight for many months.

Today my eyes glimour from moisture when I look in the mirror. Mysinuses have a tad of moisture also. I even have saliva.

Who ever thought I would be talking about bodily fluids on the web? I am celebrating! WHoopy!

Strangest thing my eye twitch came back. Not sure where it was? It is heriditary from my grandmother. She often complained about having a frog in her eye. She also had low potasium. Sometimes me too!

I am not sure what the eye twitch means exactly is it controlled by moisture? That is when my eyes are dry it looses its ability to irratate me? LOL Who knows? I just know my doctor did a blood test on me once because of it. Everything was fine. Then a few weeks later everything from my potasium to my bloodsugar dropped to dangerous levels. Then again I had the twitch for years straight and was fine.

So I have been celebrating and retracing my steps all day. I wonder how many days back I should go? I just want to feel this way forever. Almost normal is good enough for me.

Oh I found Diet Blueberry Juice with Slenda. Question why does the not diet have potasium and the diet does not? I am suspicious that they cut back on some of my blueberries? Both the diet and non diet say fortified water and blueberry juice from concentrate as the first two ingredients so I have no other evidence than the lack of potasium.

The Slenda thing is important to me because I am allergic to the nutrasweet. I do not get to do the diet food thing very often. So WHoopy again!

So call me crazy but I always want to repeat my steps when I have a good day. Hmmm? They had a great yogurt sale so I ate three yogurts last night. It is too hot to cook so that was my dinner last night.

That sounds good Milly.. hope you continue to feel this well!!

I wish my Sjogrens would take a vacation!!!
Hi, I am still newer here, and know nothing about Sjögren's. But I just read a quick brief on Wikipedia. It sounds like it would be tough to take, one more annoying and threatening thing. Wish you 2 the best.

But it also said it is based on an autoimmune disorder. Man... what is it with this immune system stuff. I think I need to learn much more. I also take Coumadin because I had a couple of PEs (pulmonary embolism), one about 1.5 years ago, the other 8 years ago. They traced it back to APS (Antiphospholipid syndrome) which is also an autoimmune system problem that allows the blood to clot easier, therefore the PEs (and so i take anti-clotting stuff). As opposed to the current state of my RA, this problem didn't affect my life at all.

But Yikes! What is it with this immune system stuff: Sjögren's, RA, APS! What else is coming? This is all getting to be a great deal of stuff to learn. The last few days have been better, tomorrow I go for the screening / admission to this research trial; hopefully will get on some RA meds soon. I still have lots of joint pain, can't walk properly, but went on some business meetings today. I am learning that when i am busy with something interesting to do --- there is no pain! It just goes away. So life is getting better.

Roland

Ramen what symptoms alerted you and your doctor to finding the APS?

Just that you have a dangerous disease and one I thought hard to diagnose. It could be helpful in helping others to know what was going on at the time of your diagnoses.

Hi Milly,

The symptoms for APS were simply the Pulmonary Embolism (PE). The one that I had was the worst physical pain I ever experienced. It is a blood clot in the lung, it came on suddenly, within about 4-6 hours I called 911 for myself. I figured I ate something bad, or just some kind of structural thing, maybe I coughed too hard, then I started getting weak, and short of breath. I decided to leave work and drive home, in the car I started panting and getting out of control, pulled into a parking lot and called. By the time the ambulance arrived I was screaming in pain and couldn't even get out of the car -- like a knife being turned around inside my chest.

So at the hospital they knew right away, started with real powerful blood clot dissolving meds, then lesser ones. Took a couple of days. Then they look for the cause of easy clotting blood. It can be all kinds of things, mostly deep vein thrombosis, often after surgery. But one test is this APS, a blood test, something like the immune system attacks a protein in the blood that helps to keep it fluid, or causes the blood to clot more easily. I just checked the wikipedia description, get this "APS is commonly seen in conjunction with other autoimmune diseases; the term "secondary antiphospholipid syndrome" is used when APS coexists with other diseases such as systemic lupus erythematosus (SLE)."

Roland
Sorry you had to go through that to get a diagnoses. As I remember alot of people die of APS before they even know they had it. So I had a hunch it may have been a life threatening symtom that led to your diagnosis.

Glad you got to the hospital in time. I have never heard of secondary antiphospholipid syndrome. So many auto immune diseases that it seems every year I hear of one that I did not know about.

I wish you the best on your war against auto immune diseases. I hope you find a medicine that works for your RA.