Back in my teens, twenties and thirties when I was collecting autoimmune diseases left and right, rheumatoid arthritis and lupus were my main diseases. Sjogren’s was just thrown in there to explain my dry eyes and mouth.
What if all those doctors had it wrong? One thing I have sure learned all these years is that it’s almost impossible for any two doctors to agree with each other. The other big lesson is that most autoimmune diseases have overlapping symptoms. And a very sad commentary is that most specialists are only generalists in their specialty. There might be a few common diseases that make up the bulk of their patients, then dozens more diseases that they rarely see. And of course, time, technology and research march on. A lot more is known and understood now compared to 40 years ago when I got my first autoimmune diagnosis.
I think I totally lucked out by getting IVIg all those years. It made me better in a way that pharmaceuticals never could. Too bad it’s so expensive! Because it takes hundreds or thousands of plasma donors to make one dose of IVIg, you have to have a really good reason to get it. Lots of people could benefit from it, but few are allowed to.
I almost hate to keep pursuing answers at this point! The whole CVID thing burned me out. Instead of having that, my diagnosis is SAD…selective antibody deficiency, from low IgM. It’s similar, but in my case, even more frustrating. It causes all sorts of problems, but there aren’t many treatments. In my 263 page handbook from the IDF…Immune Deficiency Foundation, there is only one short paragraph.
“Selective IgM Deficiency
These patients have low IgM (less than 30 mg/dl in adults, less than 20 mg/dl in children) with recurrent infections that are often severe. There are variable antibody responses. Some patients are asymptomatic. This disease may be clinically similar to CVID though it should not be referred to by that name. It is important to note that IgM deficiency is also seen commonly in DOCK8 deficiency, typically in association with normal IgG and elevated IgE.”
That’s it. The most info I can find is here.
Now I am learning more about Sjogren’s. It is sooooooo much more than dry eyes and mouth! It has many of the same symptoms as lupus and myasthenia gravis. What if I don’t have all the diseases I have been diagnosed with? What if it’s simpler than that? This article really struck me. Neurologists have been trying to pin MS on me since my 20’s. What if it’s not MG or MS, but is all explained by Sjogren’s? Despite my rheumatologist being all bent out of shape that I don’t have the right antibodies, I am now finding out that 50% of Sjogren’s folks DON’T have the antibodies!
From joining Sjogren’s support groups, I have discovered that a bunch of people also have CVID or another immunodeficiency.
I both love and hate Restasis. I am not fond of eye drops. Sometimes the drops hurt, sometimes they help and soothe. Each day I am noticing changes in how my eyes feel and function. If only I could get my Plaquenil back! You know what else is fascinating? Some doctors have prescribed Mestinon for the muscle weakness!
So far, it looks like most lupus symptoms can also be attributed to Sjogren’s. As I am always saying, I think it’s almost impossible to corral a set of symptoms and keep them clearly demarcated between the various autoimmune diseases.
Anyway, just some thoughts to throw out there.
I have the heat turned up and am wearing my warm fleece robe. I am trying to keep the chills at bay. Usually I have on a thin nightgown and the window open. My body can be awfully persnickety!