I Just Want Answers!
Posted 18 April 2007 - 11:20 AM
I have a few questions for anyone.... I have Raynaud's, have a had a nailfold capillariscopy done that showed minimal dilitation & irregular capillaries, don't know exactly if that is relative to sclero or not but new things are constantly showing up it seems & I've got new questions & concerns:
Kidney function.... anyone keep track of your labs & know what it means when your eGFR (taken from creatinine result) drops 24 mL in 10 months? Mine went from 103mL to 79mL. Everything else looked ok except my BUN which was below normal. I've read that when the eGFR is where mine is at that it's seen in second stage of kidney disease. I lost my tolerance for medium rare steak & prime rib (can't hack the flavor, used to love it) I've had edema & swelling since last spring.
A couple weeks ago I noticed tiny red dots under the skin on the end of my toes, in clusters & scattered. They look like pin ***** size blood under the skin. No trauma to feet, same kind of shoes worn for almost a year now....platelets are good.
My right eye gets really dry really easy all the time & sometimes it'll get red veiney look in the corners. I notice that as the day progresses (in the morning eye lids are puffy, face is puffy, that eye often starts to look like it's sticking out or like the eyelid is retracting on the bottom. The eye feels weird.
Mornings my hands & feet are puffy. my skin on the back of my hands gets really tight often & it looks like webbing between my knuckles on my hand & I can feel the skin pulling over my wrist bone. When I get out of the tub, as the water leaves my skin, I can feel my skin pulling on my back when I bend over to dry my feet.
My knuckles on my fingers & hands sometimes look like they're bruised. My nailfolds are always red & puffy.
Any of this sound familiar to anyone? There's so much I'm leaving out I'm sure...lol. All my labs have been ANA negative, Sjogren's negative, Sclero negative, etc. Just a high RF, but barely high.
Thank you for reading this if you made it to the end! Thanks for trying if you didn't....lol
Posted 18 April 2007 - 12:45 PM
Wow girl you do have a lot going on! I am so sorry. I'm not sure I can address everything you spoke too, but I wanted to make sure you are seeing a doctor on a regular basis and preferably a rheumatologist.
Sounds like you definitely have some sort of kidney damage going on. (I'm not a doctor, but I am a nurse) Off the top of my head I cannot remember the lab values of creatinine/BUN but the puffiness etc that you describe may be a result of this.
Sounds like you are also having some skin tightening (since you are feeling the skin pull tight when bending over).
Please keep an eye on the red spots since you have Raynauds....they could be ready to turn into blisters/sores which will need some TLC.
You sound like you have many of the symptoms of the diseases that you say were negatively tested for. However, tests aren't always the end all and be all of a diagnosis. That is why I feel you need to bring all of this up to a specialist soon if you haven't already.
I probably wasn't much help, but I want you to know you are not alone!
Posted 18 April 2007 - 01:41 PM
Wow, it does sound like you have a lot going on. I would definitely talk with whatever doctor ordered your latest Creatine/BUN test and ask them about your levels. Please do let us know what you find out.
Posted 19 April 2007 - 01:32 AM
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 19 April 2007 - 03:46 AM
I do have puffy hands and tight hands on some occasions. My last ana turned up very low, negative I guess at 1:40. The pattern has changed however from homogenous to speckled and nuclear. ???
Make sure that your blood is checked again to see if the levels are changing.