Looking for suport and suggestions!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Aug 2010
Total Posts : 50
   Posted 9/11/2011 5:11 PM (GMT -6)   
I'm off to Cleveland Clinic Wednesday and am a little nervous. It's just the initial visit and I have my long list of questions for them.
I was diagnosed with Lupus 2 years ago and although the Plaquenil and Prednisone and Medrol shots help, they truly are not helping enough. I'm hoping to get rechecked for Celiac. The 94lbs gaunt look with puffy eyes is just not cutting it anymore!!!
I've also had small amounts of blood in my urine for the last 3 blood tests and have many symptoms of Kidney involvement. Although I really love my regular Rheumatologist I am looking forward to that second opinion.
Is there any advice or words of wisdom from those who have been there that might help me on this next journey?
Thanks so much,

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/11/2011 7:33 PM (GMT -6)   
I'm new to lupus myself. I hope you can find answers to your problems.
(((((((((gentle hug))))))))))

New Member

Date Joined Jun 2011
Total Posts : 12
   Posted 9/13/2011 9:45 PM (GMT -6)   

This is my first flare but all I have had is kidney involvement so if you have any specific questions about that please feel free to ask. :) Will you see a nephrologist?

Good luck tomorrow!


Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 9/19/2011 11:18 AM (GMT -6)   
Be prepared! Take a list of all of your symptoms, your medical history, and your meds. If you write all of this down ahead of time, you're less likely to forget something. Doctors appreciate seeing a list of your symptoms.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 9/19/2011 11:33 AM (GMT -6)   
Hi! Stacy,
Chin up, shoulders back, and one step forward at a time with our hugs. You are going to a very well respected medical facility. Make a list of all your questions, in priority order, and take the list and a pen right in to the exam room. And take notes about every answer, and every "what's next" comment from the dr. Be brief, but take the time you need, and when you get back out to the car, you can add details and make sense best as you can out of your notes. If you need to, don't hesitate to ask someone close to you to go in with you to ask your questions for you. Some days my brain fog makes me wonder if I fed the bird to the cat instead of cat kibble. Second opinions are always a good idea. Keep us posted, and God bless,
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 2:43 PM (GMT -6)
There are a total of 3,005,880 posts in 329,276 threads.
View Active Threads

Who's Online
This forum has 161809 registered members. Please welcome our newest member, DragonM.
320 Guest(s), 4 Registered Member(s) are currently online.  Details
BillyBob@388, CCinPA, Sahale, Mom2angels