Nervous-going to rheumy, need advice

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Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 5/12/2010 11:27 PM (GMT -6)   
Well, I had to cancel my 1st rheumy appt, because my father died unexpectedly the weekend before. I went back home (19 hr drive) for the funeral and was hurting so bad I could hardly walk! Got some prednisone while I was there. Now I'm all better;). But I did take pxrs of my rash and sores in my mouth before they healed. So at least I have that to show him. That was on the 25th of April. Are the steroids out of my system? Can they still affect testing?
I have a list of all my symptoms (even those that don't seem to matter) and a very detailed health history. Anything else I need to take along?
Thanks guys! I don't know why I'm nervous? I'm usually a rock...
Jessica, diagnosis: unsure

Regular Member

Date Joined Feb 2008
Total Posts : 42
   Posted 5/13/2010 8:49 AM (GMT -6)   
Oh, I am so sorry about your father.  You must have so many emotions now that I can't imagine having to do with lupus symptoms at the same time.  The sooner you can get in to see a rheumatologist, the better.  Of all the people who suffer, you need help with your symptoms so you can better manage the grieving process.  My thoughts and prayers to your family.

43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 

Regular Member

Date Joined Jun 2008
Total Posts : 363
   Posted 5/13/2010 3:43 PM (GMT -6)   
Under Lupus Resources at the begining of the forum there is a great outline for a sypmtoms list you can take with you to every appointment. I use it for every DR. The offices love it, I don't forget anything and I keep a copy on my computer that all I have to do is update it it for each appointment. I even save older copies so I can look back at previous concerns and issues. The form was posted by Really Rosie and it has truly been a life saver. I'm sorry I don't know to post a link. Hope this helps.


Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg, super B complex, multi- vitamin, folic acid, 15mg er morphine twice a day and Lortab 10 3-4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7.  Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.



Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 5/13/2010 11:16 PM (GMT -6)   
Thanks so much for your support and encouragement. I just got back from the 9 hr trip (there and back). I'm exhausted, but he gave me a lot to think about, so I'm researching. My liver is enlarged. He drew all the labs for Lupus, but actually thinks I should see a neurologist. He thinks I am exhibiting symptoms that point more to CNS damage/MS. Checked me for all the Heps too, but I've been tested for those quite frequently because of my profession. So I don't know what to think anymore. I'm just so tired and emotionally exhausted! I lost my grandmother 8 wks ago, my dad 2 weeks ago, my friend lost her baby to sids 2 days before my dad, found out yesterday my MIL has thyroid cancer, and today my 34 year old cousin is in the ICU dying of encephalitis they think came from a mosquito bite! When does it end? I swear I don't know how much more I can take, and I'm 1100 miles from my home, family, and friends. Sorry. I guess I needed to vent! Again, thanks guys. You're awesome!
Jessica, diagnosis: unsure

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 5/13/2010 11:31 PM (GMT -6)   
I generally keep 4 kinds of information on the computer -

symptom list & questions -
- anything that changed from the last visit
- any questions about my symptoms
medication list & questions -
- anything that changed from the last visit
- any questions about my meds, meds I've heard of, etc

The records I saved have been life-savers: my original dr died and no one can read his handwriting -- my records are the only supporting evidence I have to show to new doctors, or more important, to substantiate disability claims!

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/14/2010 12:05 AM (GMT -6)   
Hi Jessica,
I hope you get some answers soon to your symptoms. Let us know what you find out and hang in here. I'm sorry to hear about your family...heart-breaking! You all will be in my thoughts and prayers.


Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/14/2010 10:16 AM (GMT -6)   
Jessica, sometimes life tests you in ways that make you wonder how you'll survive all the losses. Five years ago I lost my mom and dad within a few months of each other, during the worst year of my lupus. It was devastating and I believe that the losses aggravated my lupus in the way that stress can create havoc on your body.

I hurt for you and urge you to get professional help to deal with all of your losses. It sounds like you have a good doctor and I hope you get some answers real soon. You're doing a great job of documenting your symptoms.

This is a great place to vent whenever life seems to be overwhelming, and I hope you'll feel free to do so.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

Regular Member

Date Joined Oct 2007
Total Posts : 185
   Posted 5/14/2010 2:51 PM (GMT -6)   
Jessica ... you HAVE been through a lot.. that is too much.. I would be a wreck... hoping you find out something soon....
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