I was diagnosed with Lyme disease and as a sid dish the doctor found out I have Sjogren's. He is a Lyme disease specialist so he is focusing on what he knows, yet some symptoms I feel need to be addressed that are Sjogrens's..
I know the severe dry sandy eyes are S, the glands hurting under my jaw maybe are. What about the swollen gland in my collar bone?
The severe headache in the base of my skull?
Those are the main questions, until I learn more from you all.
On the lymphoma end of things, My white cell count is ok.
I have Sjogren's so I can tell you that your rheumatologist is your best bet for treatment for Sjogren's. They can prescribe Evoxac for the dry mouth, Plaquenil is pretty much standard for many auto-immune issues, so he'll probably put you on that. I have Sjogren's, Reynaud's, Hashimoto's Thyroiditis, undifferentiated connective tissue disease. They all have many of the same symptoms, so it is really hard to tell what symptom goes with which disease. I guess it really doesn't matter much which one causes them. I have bone, joint and muscle pain, swollen glands, dry eyes, nose & mouth, dry skin, several digestive issues, along with brain fog, muscle spasms and a host of other symptoms. A good rheumatologist is auto-immune patient's best friend, but they will sub you out to other drs, too. I have to see an opthalmologist because of the plaquenil (it can cause vision problems), an endocrinologist (thyroid), and they want me to have a general practitioner as well. Sometimes I think I'm going to be doctored all the way to the poorhouse, but I am doing well, most of my symptoms are under control most of the time. Sjogren's is very rare, so when looking for medical care, ask them what they know about Sjogren's. I have met several doctors and nurses who've never heard of it.
Gee you deal with a lot. I appreciate you coming forward with your info.
I see a neurologist next month. Going to the site TJ suggested I realized many of the neurological symptoms may be sjogren's. I have neuralgia in my face and migraines. This Neurologist treats Lymes also and understands the affects of both diseases on the Neuro system.
I did not know a Rheumatologist diagnosises and treats . I am disappointed with the ones I've seen. I was handed the diagnosis of Fibromyalgia for 12 years by Rheumatologists when I actually had Lyme and EBV.
I thank you again and will be open to that route if needed.
Hi.... I also have sjogrens and a "collection" of auto-immune related diseases and have just discovered a website called SjogrensWorld.org. Haven't really had time to explore it yet but it looks interesting.
I keep hearing people say, like you did, "a collection of autoimmune diseases". It seems as if they develope in bunches.
That site was recommended earlier and well worth visiting.
Thank you for responding.
Hi... Yes it does seem that way. I first had Hepatitis C in from an long ago blood transfusion.... that in '97 and I was successfully treated for that for over a year and am in remission. Within months after finishing treatment along came lichen planus which I understand is common after hep c, then Sjogrens, Lupus, Mixed Connective Tissue Disease, and Fibro. All that on top of a previous spinal fusion which has resulted in the past 3 yrs. of constant severe back pain. The Sjogrens, which was left untreated for about 3 yrs. (my fault for not wanting to take the meds) started causing pericarditis. It was attacking my heart and a stent was placed. It was at that time I was diagnosed with Lupus and MCTD through a very thorough cardiologist and sent me back to the rheumatologist. I was in denial about the lupus dx but did take the meds. A couple months later I thought I was dying I was so sick...turned out to be a lupus flare lasting 6 wks. and started on prednisone for the next 2 yrs. I have been flare free for several months now, and feel pretty good, but I don't take anything for granted and make the most of every day, knowing tormorow it could hit again. I take plaquenil and have responded very well to it after the first few weeks of side effects. A new rx for Lyrica a couple months ago has made all the difference in the world for my back pain as well and I haven't felt this good in years. I also was disappointed by the rheumatologist I saw but he was the only one within 50 mi. so I don't have a choice and still see him, but my dermatologist has been a great help and wealth of information as he used to specialize in rheumatology, and the neuro PA was the one who prescribed Lyrica, which is usually prescribed for Fibro. or nerve pain.
That was a long story just to make a comment....sorry. But do find a good rhematologist and get on some meds for the sjogrens. I had all the symptoms you described but ignored them for a long time. Sjogrens can dry out not only your eyes and mouth, but all mcous membranes in your body and attack your organs so it's important to get treatment.
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