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Ev65Roses
05-09-2006, 06:50 AM
A year ago I complained of aching joints. Had surgery on my shoulder for Rotor Cuff and the surgeon said I was loaded with arthritis. My doctor had the RA, lime and ANA. I thought I was going for positive RA but the Female doctor said that I tested positive for Lupus. I was shocked. She looked me over, checked my mouth for sores asked me if I broke out in the sun which I don't. About once a year a may get one cankor sore that lasts about 3 days and is not bothersome at all. No rash or mask. I do have osteopenia which I am shrinking. My mom has osteoperosis and has the classic hump. Her bones are like quicksand constantly fracturing.
My knuckles of my hands feel stiff and ache only when I make a tight fist. I had back surgery for a blown disk 18 years ago and do have back aches. I take Mobic every day. I was diagnosed with Sleep apnea too. I complained that I would fall asleep reading, driving or watching TV but I am not dead tired that I can't get out of bed. I use a CPap and have problems getting use to that darn thing.

Dr. Kathy Bryson sent me for more blood work C3 and C4 which were normal. Urnie test, no protien. I asked her if I had it or not and she just told me to call her if I get more symptoms and she will get me on meds. Didn't say come in once a year or kiss my butt. lol I didn't care for her bedside manner. I will ask for another doctor if I have anymore problems.

So I am here waiting for this Lupus to rear its ugly head.
About 20 years ago I mono nucleosis. Could this be related to the out come of Lupus? Have any of you had Mono? They say that it still lives in your blood.

I am so glad that I found this site. :wink:

Saysusie
05-09-2006, 03:34 PM
Hi Ev65ROSES:
Welcome to our forum, we are so happy that you found us!
Blood tests reveal that SLE patients are more likely to have been exposed to certain viruses than the general population, sometimes years before diagnosis. Among the viruses that provoke the most interest are the Epstein-Barr virus (the cause of mononucleosis), cytomegalovirus, and parvovirus-B1. These viruses are very common, but would serve as triggering agents in people with genetically susceptible immune systems.
Lupus is a very difficult disease to diagnose because it affects each of us differently. Also, there is no one definitve test that says "Yes . this is definately Lupus". Doctors have to run a series of tests which will vary depending upon the symptoms that you are presenting.
Some of us have waited over a year, while being tested, for a diagnosis.
There are several posts on this forum that talk about and explain the tests for lupus. Perhaps you will be able to find some answers to your questions in those posts!

Best Of Luck
Saysusie

thunter
06-15-2006, 04:22 PM
I am assuming from your post you are from NW Penna.
I just saw K. Bryson a couple weeks ago and let me tell you her bedside manner has not improved.

I to questioned my results and she told me that I needed to go to Cleveland Clinic for further treatment but wouldn't give me a specialist name or any help finding the right person to see in Cleveland.

:( Very disappointing. I drove over an hour to get to her office, missed half a day of work and paid the full office visit because my insurance wouldn't cover her and over $400 in lab bills and I got "you need to go to Cleveland". Ridiculous.

MR_Jill
06-20-2006, 01:34 PM
Ev65-
I too have Lupus and had Mono almost 20 years before my lupus diagnosis. Im not sure what the link is, but there definitely seems to be a connection!

ButterflyRN
06-20-2006, 02:42 PM
I got mono in college after already having Lupus for 10 years at that time.

Razzleberry
06-21-2006, 05:51 AM
I had mono maybe 30 years ago and then a thyroid condition about 20 years ago that got my rheumy all excited ..tells me the thyroid condtion is also autoimmune. I didn't know that. I think it must all be related somehow.
Sharon

Missy
06-22-2006, 11:37 AM
Thyroid conditions can be autimmune related, depending on what kind:

Graves disease is a thyroid condition that is an autoimmune disease. Researchers have recently found a gene that makes people more likely to have lupus, rheumatoid arthritis, Type 1 diabetes, or Graves disease.

I'm pretty sure my family has that gene - considering my sister and I both have lupus, my aunt has Graves, and my brother has had type 1 diabetes since age 6. My sister who has lupus has also had what doctor's call "a squishy feeling thyroid." Who knows what that is, but they keep an eye on it and it makes you wonder if it's related........

ihate2shave
06-29-2006, 08:06 AM
Interestng, I had mono and next year got severe symptoms and 1 year after that was dx. So mine were clustered close together.

terrymc
07-07-2006, 01:01 PM
Sharon....I had thyroid disease (Hashimoto) for 3 years then turned to cancer. Had to have it removed and do the radioactive iodine thing. yes..without a thyroid or with a thyroid disease you ar already looking at an auto immune condition. My Endriconologist is the one who pushed for me to be screened for Lupus. She was right....so I have 3 doctors who treat me. Mainly like you have seen others mention here it is mostly treating the symptoms. I was lucky to have the painful part!
Sorry...I should have introduced myself at before I started posting. This is such a wonderful site. It took me 2 years to finally get the nerve up to join one. I still go through the frustration of looking at how it has changed my lifestyle and it is so depressing sometimes. So.....I take it one day at a time. The only really big problem is getting my family to understand. They are VERY supportive but just don't realize that there are days I just can't carry on normally. I am going to have my rumie talk to my husband Monday...maybe he can explain it on a different level than I can. Nice to meet everyone here....helps me to see that I am not alone.
Terry