Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
I have several autoimmune diseases which include Lupus, Sjogren and a few others with a possibility of MS. I currently have lesions on the white matter on the brain and spinal cord which are causing problems with my feet, legs and hips which means Im means having problems walking. Ive ask the doctor if this is going to be permanent and he couldnt really answer except that doing the med and treatments that wed know. I have done a round of solu-medrol, on prednisone and just started cytoxan treatment. At the moment nothing seems to be working and the symptoms are getting worse. I also have spells when my face gets numb and I lose my vision. The good thing with that is it's temporary for now.
I have a rheumy appointment today for a follow up and I have my list of questions, does anyone out have any suggestions on treatment or what questions I should be asking?
Just feeling a little discouraged and alone....
I have a rheumy appointment today for a follow up and I have my list of questions, does anyone out have any suggestions on treatment or what questions I should be asking?
Just feeling a little discouraged and alone....
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I felt pretty much the same way when I was first diagnosed. I believe that I actually mourned my health and went through the stages of grief. Desperation is one of those stages. I believe that mental health is as important as physical health, and so you might want to ask your doc about ways to improve your mood and thoughts.
My favorite inspiring post on this site was made by grannyweatherwax, although she classified it as just "philosophising" - LOL. You should look her up and read some of her entries when you are blue. The bottom line is that even though things may feel desperate and hopeless, when you look close enough, the things that used to be beautiful are still beautiful and the things that used to really matter, still do. And that is what makes it worth the fight!
Hang in there and good luck with the appointment!
Thank for you very much for your understanding and support. It really means a lot that I'm not the only one to have these crazy issues. Also, I will look up "grannyweatherwax".
The moisture glands that are destroyed are never regenerated, so your focus will have to be to prevent further damage and treat the symptoms you already have. It might take a couple of months of trying different remedies and some blogging (ha!) to figure out what works for you.
So, in a way this is as good as it gets without meds, but with treatment there is some relief in sight. Like the doc said, you do have to be a bit patient. Hang in there!