Monday, August 18, 2014

At the Beginning.....

Image found here

I recently received an email from a young man who is in the diagnostic process. He asks:

"....I'm in some uncharted territory and just want to make sure that I am properly prepared for my appt. Also was wondering what to expect. What typically happens on first visit? Will any treatment be started before test results come in? Any advice you have for me would be greatly appreciated."

Here's basically what I told him:

A few suggestions:

  • If you have any copies of previous labs and diagnostics, bring them along, especially if you have a visit note from your visit with the doctor that suspected SS. Don't scramble to get this if you don't have them, however. Just be prepared to summarize the results. 
  • Put together a timeline as best you can that outlines when your symptoms started and any other medications or procedures that you have had prescribed in an attempt to treat them.
  • Try to prioritize your symptoms. Often, we show up at our appointments and have dozens and dozens of problems which are really hard to address in one visit. Concentrate on the biggies. 
  • Typically, if autoimmune disease is suspected, the rheumy will order several blood tests which look for specific auto antibodies (ANA titre, SSA/SSB, and several others) and tests that look at your overall inflammatory status such as a C-reactive protein or sedimentation rate. They may also order a lip biopsy looking for specific changes in the moisture-producing glands, and some tests that measure dry eye. He/she should also do a fairly comprehensive physical exam. 
  • My rheumy does not prescribe any of the first line medications used in Sjogren's until you have a diagnosis, because these meds have some potential side effects. You may have to wait for the tests results to come and and a second appointment with your doctor. This is hard. I hate waiting. Especially if one is feeling pretty crummy and anxious.
Do y'all remember your path to diagnosis? I'll bet you do. If you have any additional advice or suggestions please add them in the comments below. 


Lauren said...

Dry mouth often results in alot of cavities and dental work. If you have had alot of dental work, tell your Rheumatologist.

Anonymous said...

Hi Julia,

I am the young man (48 :-))who contacted you about what to expect at first rheumy visit.
It went pretty much like you said it would. I went in with my wonderful wife (school teacher) very we'll prepared. She has a great ability to provide the needed details. We had a timeline of symptoms and details of all the doctor visits and previous labs. The doc went through the details with me of my symptoms and asked questions about medical history. She did an exam of my joints to see if I had any pain.
She ordered the following tests:
aNA Comprehensive panel
Igg 1,2,3,4
C-reactive protein
Protein Electro phosphorous Serum
sjs ab

She said possible Sjogrens or possible virus. My symptoms flared in late June and were intense for about a month. Feeling a good bit better at this point but I need some answers and I hope these tests will provide them.
All in all it was a pretty good experience. The staff were extremely nice and the doctor treats many patients with Sjs.
I will update when I get some results.

Thank you for all the helpful advice! It was exactly what I needed.

Kind Regards to all,

Julia Oleinik said...

Andy.......anyone who is a decade younger than me is just a kid. Just sayin'.

I'm so glad that your visit with your new doctor went well!