Hi everybody!
So, I had my first rheumy appointment yesterday. She was great. She did a very thorough exam and history, listened and responded to my concerns. She didn't do the Schirmer's test on me, though, which surprised me. She said that my symptoms were consistent with SS, and she thinks I probably have Primary SS, which she called Sjogren's Disease. She wanted to run all my bloodwork again, though, as she isn't a fan of the Labcorp autoimmune tests, which is what I had in February, showing +ANA and +SS-B. So I should have an answer by the end of the month!
It sounds like she's pretty sure it's SS. She didn't mention anything else it could be and gave me some SS literature. She said my case is mild, and hopefully we can keep it that way. It doesn't feel mild to me! But of course it could be much worse. Only my eyes really have dryness problems so far. My mouth is only occasionally dry. I went to the dentist this morning and a clean bill of health! So, I have a lot to be thankful for!!! It's the fatigue that really gets to me. Hopefully Plaquenil will help with that. I am really looking forward to starting treatment and moving forward. Thanks to all of you for being so supportive and teaching me so much. :)
Any suggestions for my follow-up appointment would be great. It sounds like she's planning to put me on Plaquenil. I want to ask her about sun sensitivity and if that's causing me to flare. Other than that I don't really know what to ask her. :o
Nymph!
Thanks for letting us know how it went, sounds like you have a good Dr! I am glad she is listening to you! I only can suggest that when you have a question, write it down, keep a running list and then when you see her, you will get a lot of answers!
Keep reading this sight, I am sure many will have good ideas for questions. Glad you got such a good result from the dentist too.
Gayle
Nymph,
Great news! A good doctor is hard to find and she seems like she is sensitive to listening to you. Yes, I would ask about the sun and the heat. The heat hits me as hard as the sun. And we all need sun. I will open my blinds in my room to get some Vitamin D. And I can watch the birds and wind blow too..
And as Gayle said, get that tablet out and start making a list. Address little things, if you think it concerns you, then ask.
And congrats on the clean dental check up. Sounds like you have it going on..
Just curious, did they run blood work in your thyroid also?? ~sass~
Thanks, ladies!
You are both so right. I need to make a list! ::)
Sass, my thyroid checked out fine last December. When she was examining me the other day, my rheumy said that my thyroid was slightly enlarged, but that my numbers (from December) were okay. I honestly don't know if she ran those tests again. She said she was running the autoimmune panel again and liver and kidney function. But then the lab tech took 6 vials of blood! So I do not know. I will ask her about that on my follow-up.
Also, I made an appointment with an ophthalmologist today for a baseline exam. I wouldn't have known to do that without you all!
Blood draws involve a lot of different colored tops on the tubes when a lot of tests are run. Red is no coagulant. Green is heparin. Purple is EDTA. And so on. The reason for it is different lab tests on different machines call for different coagulants, or none at all. There is no reason to worry about 6 tubes being drawn.
Unless, of course, your next checkup shows anemia.... ;D
Sharon
Good to know! :) I wasn't too worried - and the tech did a great job. No bruising! Woohoo! It was just more tubes than I have ever had at one time before. Welcome to the wonderful world of rheumatology. ;D
Wow, Sharon, I never even paid attention to the different colors on top of those vials! That's interesting!
My first trip to Quest after seeing my rheumatologist was like being sent to a vampire... I don't even know how many vials they took. Now, when I go for routine blood work, I think it's 4.
BTW, my rheumatologist calls it Sjogren's disease too - my latest lab order, he apparently didn't feel like looking up the diagnosis code, so he just wrote "Sjogren's disease" on the lab order! I really like that he doesn't use syndrome. I wish the rest of rheumatology would drop that word and call it what it is... a disease!
I've never been told if my disease is mild, moderate, severe or anything. Maybe it's because I'm always too busy complaining about my long list of symptoms ;D
Nymph,
I know for myself, my thyroid goes up and down all the time. Some doctors are of the thinking that checking your thyroid once a year is sufficient. I know for myself, that isn't true. I have to have mine tested more often.
If you have difficulty sleeping at night, that too can contribute to fatigue. ~~ Yawn ~~
One things for sure - there is never a dull moment with Sjogren's! ;)
Bucky
MsHistory - Yup, "disease" is more accurate. I think I'll end up just calling it "Sjogren's", though, and leave it at that. For example, if I'm introducing the subject, it seems a little more natural to just say, "I have Sjogren's. It's a disease that causes the immune system to attack parts of the body." I find that saying "sjogren's syndrome" evokes the "huh?" blank look response as people try to figure out what I've said. Too many syllables on top of unfamiliar sounds. ;D
Thanks, Bucky. I will ask her about the thyroid thing. Yup, my solution is 3 mg melatonin when I go to bed and 3 more whenever I wake up at some unwholesome hour. I can often sleep 10 hours that way, which seems to be how much I need to function. So much for having a life! :-\
Glad you've got a good doc - that is the first hurtle, and you've done well.
Some things I've learned thus far that may help in the future:
Make sure she has your pharmacy in her system - there will be times when your appointment is far in the future and you're having an issue. If she's got your pharmacy - she can just call in your meds (mine does it electronically). I've called in, left a v-mail, and the next day Walgreen's called to say my script was ready.
If you work, find out about work excuses - If I'm out more than three days for a flare, I need an excuse (unless I'm already out of sick time and am using my vacation time -- actually, I think I'm using "leave without pay" most times lately as I'm out of both SCK and VAC)
Work out a system to get copies of your medical reports - I worked this out with the ladies in the front office rather than my dr. They noted my account and I have them mailed so I don't have to go back up there to get them or wait for them to make copies.
Keep a list of ALL meds, including OTC products and supplements - My rheumy writes down and notes everything, and she always asks if I've added a supplement. That is very important that your doc is up on everything your are putting in your mouth. Mine is also interested in my diet and has added blood tests to the regular regime to check my nutrition levels. So if I'm not getting enough protein, she will be sure to tell me.
Be very self-aware - keep a log of things when your symptoms get worse. Make sure you track events going on at the time, stress, hormones, weather, change in diet...whatever. Note the symptoms, and even what you took to treat them and how you reacted to it.
Hope this helps.
iraisin, Thanks! Those are very helpful suggestions. :)