upcoming appt on Monday

[Melindarose]

Hello, I have an upcoming appointment on Monday and would like some advice on how to handle my situation.  I am seeing a rheumatologist that I was referred to two years ago, or actually I am seeing her PA as he is available way before she is.  Several years ago I was diagnosed with severe Fibromyalgia, Sjogren's Syndrome and
Raynauds by another Rheumy who moved to a much larger town out of state, shortly after I began seeing her.  When I started seeing this current doctor she said she thought I only had the Fibro and Raynauds.  She thought the dry mouth and eyes were totally from some meds;  namely these two flexeril,  & prozac.

My oldest son is an optician and made an appt for me recently to see the doc he works for as my eyes have gotten so much dryer.  He did some testing and diagnosed me with Sjogren's.  I had punctal plugs placed in my lower id ducts and began using Systane Ultra drops which have together made quite a differnce.

I initially made the appt. on Monday with the Rheumy's P.A. to have my shoulder injected because of rotator cuff tendinitis.  Now I want to address the Sjogrens that day as well.  I have terrible sores in my nose which are constantly bleeding.  Using saline drops are not helping at all.  For my mouth I use Biotine mouthwash, and certain cough drops.  This summer has been difficult. I have had some bad morinings especially.  I awake feeling terrible.   I get very flushed and people comment on it.  I feel like I am going to throw up and just sick.  If I can get thru the first 5 hours of my work day I will be fine.  (I do licensed day care at my house 50 hrs a wk plus another 10 - 20 hrs for cleaning, book work and prep).  I need to feel at least pretty good ALL the time.  Am I asking for too much and being unrealistic?  I want the medical world to listen to me.  I don't want them to write me off just because their are others who are worse off.  I may not be the sickest person, be I am so miserable because I work my but off at a 65 hr a wk job and love the chilodren I work with.  I am 55 yrs old and cannot afford to quit anytime soon. 

Melinda - I see you are also 55 & thought it quite a coincident as we have the same name and disease.

Thank you all for listening and please let me know how to best handle the P.A. &  doctor.  I don't want this appt. to be a wasted one.  I don't want to waste anymore time.

thanks,  Melindarose

[bloodless]

Make a list of all your symptoms so you don't forget them and go through each one with your doctor. Once you have sores in your nostrils you need to use antibiotic ointment. Tell your rhuemy an eye doc has diagnosed you with sjogrens. He/she will most likely put you on plaquenil.

[Scottietottie]

Hi Melindarose 

I suggest you make a note of everything that has happened since you last saw the rheumy. You could type it up with dates. (I keep a symptom diary and usually make a synopsis of it before appointments)

Make a list of what symptoms are current and annoying and also a list of questions to ask. Take paper and pen to note answers down!

Good luck. Keep us posted.

Take care - Scottie 

[Joe S.]

Welcome Melindarose. make the list and bring an advocate with you.

[Melindarose]

Thank you all.  I will get the list together.  There is so much to go over.  So far my fibro is so bad everyone has wanted to blame everything on it, but now that the eye dr. has given me this diagnosis and I nave more symptoms I hope they will listen.

[Meld256]

Hi Melindarose,

Let me Welcome you to Sjogren's World!   
And yes, we are the same age with the same name; quite a coincidence indeed!  Especially since we don't seem to come across too many other "Melinda's."  We do have at least one more here that I know of.

Everyone else has good advice; to tell this Rheumy all your symptoms, that you've previously been diagnosed with Sjogren's and now an eye specialist has also diagnosed you. You could ask them how they would treat you for your symptoms now.
I also started with the Fibro. dx and had some pretty tough days. Then the eyes, teeth and mouth problems, joint pain, etc. began. So there are several here who have that Fibro/Sjogren's combo and we can sympathize!

I hope you find the forum encouraging and friendly. There's lots of info. here and you can always ask anything or bring up a concern and we'll be here for you. 
Good luck with that appointment and we look forward to hearing more from you.
Melinda

[Catilee2]

Melinda,
   Welcome to Sjogren's world. Ditto to the advice the others have given you.  You will find the people here very supportive. I hope your appt. goes well on Monday.

CAtilee 2

[Meld256]

Hi Melindarose,

Just wondering how your appointment with the rhuemy went.  Hope it was a positive experience,  Please update us when you're able.  I also hope your shoulder is feeling better.

Thinking of you! 

Melinda