Yesterday I saw the rhuematologist and got the results of the many blood tests and hand x-rays I had on my previous visit. This appointment was with the main doctor (Professor Smith), and not the registrar. He's a really nice man. Most of my blood tests were normal (yay!) but a couple weren't, and they were the important ones. One of them was for 'inflammatory' markers which was way elevated - meaning I have a great deal of inflammation going on with my body. That I knew without needing a blood test to tell me, but it's important that the doctors are aware. The second one showed that I have a certain kind of antibody in my blood that goes off and attacks other things in my body for no good reason. This antibody attacks the moisture producing glands through out the body.
It's called 'Sjögren’s syndrome', and is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. It's pronounced 'Show Grins' which is oddly ironic considering one of the things it causes is dryness - including lips, skin, mouth, eyes, sinus, etc. The syndrome is named after the man that first identified it in 1933 - Dr. Henrik Sjögren.
Sjögren’s can affect internal organs as well because almost all of our internal bits either produce or make use of various types of moisture. There are two websites that I found interesting in my search for information. This one has a chart of the body with a few of the areas that can be affected: http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms and this other one is a more text based list of issues with the percentages of people with this having the particular item(s):http://www.medifocushealth.com/RH011/Introduction-to-Sjogren-s-Syndrome_Signs-and-Symptoms-of-Sjogren-s-Syndrome-print.php. Actually, backtracking on the last site since I noticed that it was a 'print' page, the whole site is rather very detailed: http://www.medifocushealth.com/RH011/Introduction-to-Sjogren-s-Syndrome_... Interesting reading.
The reason I named this post 'More Answers than Questions' is because after reading and looking into things, a whole lot of my weird health stuff can be attributed to Sjogren's. (I'm so proud - I just typed that without looking and got the spelling right). Even my weird nerve-sensation thing where you touch me in one spot on my back and I feel it in another place is covered. My voicebox issues with being hoarse when I was a kid and the months-long times I've been hoarse as an adult. My cough that isn't bronchitis, all the sinus issues I've had, losing my teeth, strange rashes, etc. Explained. OK, so I know it's not the best thing in the world to have, but it's not likely to kill me (unless I get serious internal complications), and it gives me answers to the weirdest stuff about myself. It's better to know the cause/reason, I reckon.
I'm on a new prescription that's for rheumatoid arthritis, lupus and malaria ... it's an anti-inflammatory but it takes about six months before I'll see any improvement. When we do see improvement, they will be taking me off Fenac, which is what I currently take for my arthritis. In particular it's important to get me off the Fenac because the longer I'm on it, the more likely I am to have any of it's various stomach related side-effects. I've been taking it for about 3yrs now if memory serves me correctly.
It's interesting that going to the doctors for what I thought was an ear infection has resulted in finding the 'key' to so many different issues. So it's not good news, but I am glad to have some answers finally. I'm still weird, but now at least I know why. :-)
Answers, answers
Professor Smith seems to have gotten a good grip on many of your more distressing symptoms and tied them all up into Sjögren’s syndrome. I say 'distressing' because these symptoms are aggravating - dry eyes and dry skin are constant and must be dealt with consistently or there will be hell to pay in the future. The links were very helpful to understanding and made me think that Wayne would benefit at looking at this syndrome. I talked to him today, and you know what? - he had looked into this syndrome in the past but had thought that he did not have it as severely as it was described - but that it did describe a lot of his experiences with his eyes, mouth and skin. He told me that your description (a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands) was very well put and was helpful. Because he has a lot of trouble with being in the sun (and not right away, do the symptoms show up) and getting hive-like reactions. Anyway, I thought you would like to know that I passed this information on over to him. I think it will help him.
I am so glad to have both the internet and my computer back - it was over a month of not being all together... and I hated not being able to do anything, especially with you. We have been less frequent in our visiting via ICQ in the last months but this was way, way too much space and time and I MISS YOU!!!!!