I have finally got an appointment with a rheumatologist in two weeks. Have tested negative for everything except for a very high white blood cell count. What questions should I be asking this dr.? I am really not sure where to start.
What are your main symptoms? Good luck ! I didnt land with a great dr and boy am i paying now make sure you think they will be responsive to you !
Quote from: Tracyrose on May 12, 2014, 10:36:34 AM
What are your main symptoms? Good luck ! I didnt land with a great dr and boy am i paying now make sure you think they will be responsive to you !
My main symptoms are the extremely dry mouth, tongue, lips, teeth etc. Even xylimelts don't melt! Eyes, nose, etc. I can live with - drops are helping.
I am quite old...I mean for initial sJs dx. I didn't know I was going to have to "prove" myself. I learned that on this forum after my dx. But...this is what I did:
I built a timeline. I started with the first time a dr. noted a SjS symptom. Some instances it was a range as it had started so long ago. At the end of that, I put other symptoms I has experienced all my life or for a significant part of my life. For instance, cold hands and feet (lifetime) and/or light/sound sensitivities-since mid to late 40s. I also wrote what I thought had caused the second (perimenopause>menopause).
Miraculously enough, the dr. went thru each point. Then he announced I was out of the age range for initial dx and it was likely sicca complex. I had to ask what that was.
Eight days later he called me to apologize ...that I had three antibodies positive which was unusual in that most people would show positive for two. He prescribed pilocarpine...then told me to come back in about 6 or 7 weeks later. Easy peasy ...or so I thought.
I think the real doctor you are searching for is one who will treat your symptoms: positive or negative. Or that is what I have learned from this board.
Good luck, ccc
Richards1953 ..... I agree with cccourt1942 about having a time line or at least a list of symptoms and when they started and then worsened. Also any family history that might help.
When I went to see my Rheumatologist last July I did not really know which disease I might have, but I suspected I had an Autoimmune Disease. I had never heard of Sjogren's. I had had dry eyes and mouth for a long time, the dry mouth much longer than the dry eyes. But I actually did not go to see my Rheumatologist because of those symptoms. I went because of the joint problems and the skin/rash issues that would not clear up. Plus, I had 2 factors that could have triggered an AI Disease. I had Hepatitis C, which can trigger AI diseasess and I had recently treated with 48 weeks of Interferon, which can also trigger AI Diseasess. So I was quite suspicious that I had an AI Disease when the joint problems and the skin issues did not clear up after Hepatitis C treatment. In addition, my mother had Rheumatoid Arthritis. I also had a positive ANA.
So when I went to see the Rheumatologist, I told her point blank that I wanted to know if Hepatitis C or Interferon had caused me to develop an AI Disease. Plus, we went through all of my symptoms and history and she had a long list of her own questions to ask me. She did a thorough exam. Then she ordered a truck load of tests, around 35 tubes of blood.
In hind sight, there were several things that I had that I actually did not know were related to my diagnosis until later. It never occurred to me that the urinary urgency, frequency, and supra-pubic pain were related to Sjogrens. Plus she noticed that I had a very fine rash on my cheeks and bridge of nose. I also had no idea the dry eyes and mouth were related to an AI disease. And I had Peripheral Neuropathy, which I thought was due to Hepatitis C. Now I know it is Sjogren's related.
I mention this because you may have symptoms that are under the radar but that may be due to an AI Disease. So be sure to think of any and all possible symptoms or things that have been bothering you, even if minor, because they may be symptoms of an AI Disease. If you have a good Rheumatologist he/she will ask you a lot of questions about possible symptoms and will do a lot of tests to test for a lot of different diseases.
cccourt ..... how can one be out of range for an initial diagnosis. LOL. I am 68 and was just diagnosed last year. The reason I was never diagnosed before is because my previous doctors all said all of my problems were due to being old and overweight and if I exercised and lost weight then I would feel better. So, if I had had competent doctors I would have been diagnosed at least 10 years ago, maybe even sooner than that. But I had incompetent doctors. So I was not out of range for an initial diagnosis. I was completely misdiagnosed until I finally found a competent doctor (my current Rheumatologist) who diagnosed me right away. I told her the same things I had been telling them for years. They screwed up. She diagnosed me almost immediately. And she suspected I had an AI Disease just from my history and physical. So if the doctors screw up and misdiagnose us, then that may put us at a much older age when first diagnosed, but we still have the disease. And it is their fault we are "old" when we get diagnosed.
I agree with previous posters. Start a journal writing your symptoms how long they've been going on and how they were treated. Provide a summary to your doctor when you see him. Maybe you can do a search this site for the topic of journaling. It will give you an idea of what others usually do. I find it very helpful when I go to the doctors. Also, bring copies of whatever lab reports you have.
I agree with the others. Write down your symptoms and about when you started each one. Even if it's something that doesn't seem significant to you. For example, I wrote down "bruising more easily". I had a list that he took and went over each thing. He told me disease is like a jigsaw puzzle and every piece I provided made it easier to see the final picture. He still has me do this.
Also, write down your questions you want to ask, but try to limit it to the few main ones. One, most Doctors will be more receptive to a few questions than being overwhelmed with a huge list. Also, write them down for yourself. Once he started questioning me, I would have forgot a couple of my questions if I hadn't had them written down. He was throwing a lot of information at me, so it would have been easy to forget something.
If you've been to the opthalmologist since this began get a copy of your consult and bring it with you. If you have not seen optho make an appt ASAP ad see him or her. If you have SPK, spontaneous punctate keratitis it points toward a diagnosis of sjogrens. They should also do a year break up time and possibly a schirmers. These things will help your rheum make a diagnosis. Did you make sure that the person you are seeing treats sjogrens? Some Rheims run "arthritis mills" and won't be bothered with diseases like sjogrens. That's the definition of the first rheum I saw.
Out of Range: synonymous to "put out to range" ....ha, ha
Hey..I am reporting...not justifying! ;)
In his defense, the "average" range which he claims early 40s. Period. My doctor posits the disease itself progresses the 20 years of 40 to 60. He is quite receptive to me...spends scads of time with me...but he states he is not in the least bit concerned I will progress at age 72. He realizes I have had this for many years...but will only concede to last 6 years since those are the years I consulted an ophthal for "allergic" conjunctivitis 3 times in 4 years and an ENT too many times to count for sialadenitis for nearly 6 years. They can't go back the 30+ years to the first time an optometrist noted the fluid on my eyeballs looked like shards of glass. I am glad I have an explanation much more than the dx. Really. Makes me feel so much less crazy.
Oh yeah..my sjogren's friendly dentist agrees with the "worst is over" scenario due to my age. He believes I will die with my original teeth as I have had more discoloration than actual deterioration. He says I am QUITE fortunate. I do see him 4 times a year though. He has not put me out to pasture.
When I see what could have happened, I understand I am one of the less affected and shouldn't even be on this forum. But hey...I love you guys! (gals).