So, the receptionist answered the phone and I told her I had been to eye doc and told her he said it's SS and she said OK. She told the nurse and then said, "oh yes, that's the same thing as dry mouth she just has it in her eyes". I said, "OK, welllll, should I come in and discuss this with Dr Shah.?" She said, "well, lets just let your eyes clear up first".
WHAT NOW??!!!
Hi there,
Welcome to SW!
First off, I would reccomend getting a good rheumatologist. If you need a referral, try to get one.
Second, see an opthalmologist and get your eyes straightened out.
Third, NO SJOGREN'S SYNDROME IS NOT JUST DRY EYES AND DRY MOUTH!! Don't ever let anyone tell you that.
Please let us know how you make out. Don't let this go.
Pooh
Newbie,
Poochie has given you sound advice and I can't think of another thing to add.
The only thing I can add, is to find a good, simple site, that defines SjS, print it, and send/take it to the receptionist and nurse, because they have the wrong idea of what it is, for sure.
This is a very good basic definition : http://www.rheumatology.org/public/factsheets/diseases_and_conditions/sjogrens.asp?aud=pat
Ditto for all you have been told. Find a good rhuemotologist. Wow! You have to advocate for yourself. Hugs, Redetha
I'm not sure how they think that your eyes will "clear up." Did your eye doc prescribe Restasis or another medication? If not (and probably even if he/she did), you definitely need to see a rheumatologist. It's hard to find one who really understands SJS, but it's worth the search; don't be afraid to call around and ask lots of questions (e.g., "What percentage of your patients have Sjogren's?").
I wouldn't talk to the nurse or receptionist any more. Ask to have your GP call you so that you can feel him/her out. My GP referred me to my amazing rhuematologist, and I'm forever grateful. If your GP seems to think it's no big deal or will just "clear up" (sorry to keep quoting it, but the phrasing has me seriously annoyed), you need to find a new GP as well as a rheum. If your GP understands, ask if he/she knows of a rheumatologist who treats patients with SJS (some have only limited experience). Additionally, if your GP responds with compassion, don't hesitate to suggest that he/she discuss Sjogren's further with the nurse; that type of dismissal is insensitive, ignorant, and unacceptable.
Best wishes for finding good care soon.
Thanks for everyone's input. I was a bit tickeddddd off to say the very least. She totally dismissed it as being nothing. ::) Now, had she felt like I felt getting out of bed this morning or felt the burning in the eyes that I felt last night, maybe, JUST MAYBE, she would be a little more understanding.
I'm going to just call and tell her I would like an appointment. I would also like to get to the bottom of the blood pressure so I will tell her THAT's what the appointment is regarding! ;D
I was achy yesterday and PMSing to top it off so I was more in the mood to cry than I was to fight with her.
Have a good day EVERYONE!!
I second the recommendation to see a rheumatologist. I'm not having bad symptoms but I'm seeing the rheummy every 3 months for a year and then every 6 monts for monitoring.
My main concern and the reason I made the appt with the rheumy is that Sjoren's can adversely affect body organs-we need to be monitored for this.
Screw the nurse, she didn't know what she was talking about.
Hi Remembering...
Welcome to Sjogrens World!
I can only echo what the others have already mentioned.....
Get a good rheumatologist and be your own advocate. As you gain more knowledge and information on sjogrens...pass it on to others to help educate those who think its "only a dry eye and dry mouth thing"!