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Nervous-going to rheumy, need advice

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Posted 5/13/2010 4:27 AM (GMT 0)
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...

Posted 5/13/2010 1:49 PM (GMT 0)
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.

Posted 5/13/2010 8:43 PM (GMT 0)
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.
Posted 5/14/2010 4:16 AM (GMT 0)
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!
Posted 5/14/2010 4:31 AM (GMT 0)
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!

Cheers,
Posted 5/14/2010 5:05 AM (GMT 0)
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.

Babs
Posted 5/14/2010 3:16 PM (GMT 0)
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.

Pat
Posted 5/14/2010 7:51 PM (GMT 0)
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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