Follow-up visit with Rheumy - ?? I should ask

[kirstenp]

Hi All,
Last Monday I had my first visit with a Rheumatologist.  My main symptoms are peripheral neuropathy in my feet, dry eyes (dx by optometrist in spring) and joint pain.  He ran lots of blood tests and ordered an MRI, which I had last Thursday.  My follow-up appt is this afternoon to go over all labs and MRI.  He suspects Sjogren's.  I have had Hashimoto's since I was a child (now 43) and there is a strong, strong family history of autoimmune disorders on my mom's side of the family.

Sorry for the late notice but if anyone has any advice about what questions to ask at this appt. I would appreciate it.  Plaquenil was already mentioned.  I always get copies of all of my labs so will have that info later today.

Thank you!  A little nervous about maybe finally getting some answers after 7 years of symptoms.  I have had 1 neurologist, 2 endocrinologists and many GP's blow my symptoms off.  Go figure that it was finally my Gynecologist that finally referred me to a Rheumy.  It's nice that this guy is finally taking me seriously!

Kirsten

[Jellyb]

Hi Kirsten,
It sounds like you have everything covered, I know it is nerve wracking to see the doctor but if you have someone to go with you to the appointment thst might help to take notes for you.

Also depending on your labs ect, if he decides to put you on plaquenil, make sure you get your baseline eye appointment before you start the drug,

Good luck to you and let us know how it goes :-)

[Scottietottie]

Hi Kirsten 

Welcome to Sjogren's world. Take a list of questions with you. Write them down before you go and also take pen and paper with you to jot down the answers. It's so easy to forget something when you are there or to forget what you've been told! I'd go armed with a list of current symptoms too.

Good luck. Let us know how it goes.

Take care - Scottie 

[Joe S.]

Welcome kirstenp to the forum. You will find a lot of information here. I know I am late to this, B12, D3, Omega 3 is a nice place to start. I also take carrot juice, Alpha Lipoic Acid, and Acetyl-L-Carnitine. Dark cherries help with RA issues. Walnuts (2oz/day) help with Sleep and Diabetes.

[Meld256]

Hi Kirsten,

Allow me to Welcome you to Sjogren's World! 

I think I might be too late with a response, but Scottie's advice is great, so I won't repeat. A specific question I used with my newest doc was "How do you feel my symptoms can best be managed? Is there anything else I can do to help myself feel better?"
Giving a short summary of ALL your symptoms will be very helpful, as well as some specific about how this all affects your daily life.
Good luck.  Keep us posted.  I think you'll find many helpful people here, lots of understanding and the fact that "we get it!"
Take care, and we are glad you're here! 
Melinda

[kirstenp]

Thank you, everyone, for your responses.   Well, turns out all my tests came back normal/negative.   They ran a urinalysis, Rheumatoid Arthritis Factor, ANA, CCP Antibodies IgG/IgA, Sed Rate and C-Reactive Protein.  The brain MRI was also normal.  Based on my symptoms, though, and my strong family history of autoimmune diseases and the fact I already have one autoimmune disease, he did dx me with primary Sjogren's. 

They are going to start me on Plaquenil and I go back in 4 months.  My primary complaint is the neuropathy in my feet, not so much the dry eyes or mouth *yet*.  They are hoping the Plaquenil will sort of tamp down my symptoms.  If not, then we'll try something else.

Does this sound reasonable?  And did they run all of the right tests?  They said they don't do the lip biopsies - for various reasons. 

Kirsten

[Meld256]

kirstenp,

Sounds as if they ran all the most important things I can remember (brain fog, ya know?)  I'm glad to hear they are beginning you on Plaquenil.  Of course, everyone can respond differently to it, but for many of us it has been a huge help.
I also had a lot of the burning, stinging and tingling pain in my feet and kneecaps.  The Plaquenil has calmed that down almost entirely and my knees are not so tender. I have about 50% more energy than before and it's helped my joint pain, too.
You may already know this, but it can take some time (weeks-months) to feel the full benefits of the drug. It is known to not only help symptoms but also help slow the progression of Sjogren's.

Keep us posted. By the way, are you using any drops for the dry eyes?
Take care,
Melinda

[really?]

does sound like they did the right stuff,, BUT it sure makes things murky when soemthing doesnt stand out,, makes us wonder if we really do have a problem,