New here! Long story and some ??

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Crystal74868
New Member


Date Joined Jan 2012
Total Posts : 6
   Posted 1/7/2012 4:57 PM (GMT -6)   
Hello everyone..I am new to this board but very grateful I found it!! I have a couple of questions for anyone that can help. Let me give you a little info about myself..
I have had joint/muscle pain since I was 10 years old and have been tested 3 times for RA. They have always been neg..Thank goodness! but I have always had the pain and stiffness and the swelling. 2 years ago I herniated a disc in my back and it has never healed, has been hurting (not unbearable but uncomfortable) since then. I thought that my back was making my pain and stiffness feel worse and maybe I was just feeling icky from being in some level of pain for awhile. But in December, I finally got into a doctor because I was starting to feel extremely fatigued and hurting more all over. My hair started to thin alot and I just didn't feel good EVER. I was researching my symptoms online...i know nono But I was convinced it was my thyroid. Well, got in got labs and about a week later I got a call that "Everythings fine, except a kidney infection" I was not relieved at all...I for sure don't want anything to be wrong with me but I also want a reason to why i feel like I do! I cried like they told me I was dying!! Then about a week later on a friday night at around 7 she called me before she was going on vacation to tell me some of the other labs came back and we needed further testing. So yesterday was my appointment and I wasn't told the specifics of my results (I should have asked) but I know my ANA was positive and my c reactive protein was elevated. After my embarrassing physical exam ( I am 29 and move somedays like I am 99) he started me on prednisone 60 mg then decrease slowly for 2 weeks and some b12 shots (because he said I looked very fatigued and drained) and some melaxicam. and I have to come back in a month, then will draw more labs and make appt with rhuemy if needed at that time. Does this sound familiar to anyone else? Is this a pretty standard way of diagnosing lupus? He said he didn't want to say for sure yet until he sees how I feel when I come off the steroids. ?? And also one more question.. I have never had an ulcer in my mouth before, does it start out with a hard knot where your cheek meets your gum? I have a hard knot but it doesn't look like a canker sore at all and it hurts pretty bad and my face is swollen from it a little. Sorry so long, I just wanted to get everything out. Thanks for any help you can offer confused

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/7/2012 5:53 PM (GMT -6)   
Your aches and pains sound like lupus symptoms. Kidney problems can go along with lupus as well as other problems. I'm waiting to see my GP for strange results on my urinalysis from the other day.
The predisone is common treatment for flares. Meloxicam will help the aches.
It's normal to have a lot of bloodwork with lupus. It's a good monitor for hiding or approaching illnesses.

I've gotten only a few sores in my mouth since diagnosed and the were small thanks to the plaquinel I'm on. They do get tender though. Rinsing with a warm salt solution helps me.
Joy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/7/2012 8:51 PM (GMT -6)   
Welcome to Healing Well!

Your doctor sounds like he is addressing overall inflammation and tiredness with Prednisone- some GP's think they can handle Lupus but this fellow suggesting a Rheumy is a good sign. The rheumy's are more experienced and better trained for Lupus than a general dr.

There are other medications (ie Plaquenil) that do more to address Lupus itself rather than the inflammation, there are also some treatments like Cellcept, Imuran, MTX and others that can be used in more symptomatic situations.

There are lots of different mouth sores, warm salt water is always a safe treatment, but if it persists after a week check in with your dr.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Crystal74868
New Member


Date Joined Jan 2012
Total Posts : 6
   Posted 1/8/2012 9:46 PM (GMT -6)   
Thanks for the responses! I have been looking over alot of posts and I could have written a lot of them myself! So strange to find out things that were never connected in your mind, all seem to be coming from the same source! I forgot to ask...when I was 14-15, I had grand mal seizures for about a year and I was seen by many docs and many tests were ran and no one could ever figure out a reason, they eventually said it was "probably a hormonal imbalance" but they disappeared suddenly and haven't had one in 13 years. Is this something that could also be connected?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/9/2012 11:28 AM (GMT -6)   
I doubt it will ever be shown for sure if the seizures were/are connected or not, but to be on the safe side I would always include them on your medical history so your current doctors know they occurred.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/13/2012 5:20 AM (GMT -6)   
Hi there! I'm sorry u are going thru this cry
it definately sounds familiar to me - except hair bc I have a ton of it! I prob wouldn't notice!
anyhow..yes the ana & c reactive protein, pain starting in back then progressing ..all of it!
took 3 yrs for me to get dx rolleyes by that time I was a BASKETCASE!
my advice is to get in rheum asap - get on waiting list & call everyday!
JUST BC U FEEL BETTER FROM PRED TAPER DONT LET IT LULL U INTO NOT GETTING IN BC CHANCES ARE U WILL HAVE MORE EPISODES!
GOOD LUCK & LET ME KNOW UPDATES! :-) Angelina

Ps. Mouth sore - is it cheek or gums? If gums go to dentist ASAP but if cheek then YES ..HAD THAT TOO! Rinse w PEROYXL DENTAL RINSE By voltage - it works..its an antiseptic!

Crystal74868
New Member


Date Joined Jan 2012
Total Posts : 6
   Posted 1/13/2012 12:16 PM (GMT -6)   
Thank you so much Angelina!! I am down to 20 mg a for the next few days on my pred and can already feel the pain in fingers and toes again. But I keep thinking maybe I'm just nuts. I can't wrap my head around all the things I have been feeling the last few years have been connected and there's an actual treatment. It's weird. hopefully I'll get some news next month when I go back. I'm just thankful to know that other people are dealing with the same things ( even though I don't wish this on anybody!!)
The mouth sore is not hurting anymore and never "came up" it's went down alot but it's more on my gum and just swollen now. The dr looked at it when I was there and said it may be lymph nodes along there because I had a very red, hurting ear (I'm easy to get ear infections) or it may be a canker sore. If it doesn't heal up pretty soon, I'll get to the dentist for sure though.
I'll keep you updated on my visits, Thanks Angelina!

whytdrgn2006
New Member


Date Joined Jan 2012
Total Posts : 4
   Posted 1/14/2012 7:08 AM (GMT -6)   
Mouth sores and seizures are two symptoms of lupus. The literature claims the mouth sores are usually painless but I have yet to have one that is not painful. Loss of hair especially at the front of your head is another symptom. I have three herniated discs too. Unfortunately no one ever told me we can have multiple autoimmune diseases. I tested negative for lupus always but have 5 of the specific criteria and have had since I was 14 and I am 49 now. The docs always said you have lupus but my bloodwork said no. 3-5% test neg but have lupus. I have multiple sclerosis, lupus, ankylosing spondylitis, and some type of vasculitis (which is usually associated with lupus). Oh and scoliosis from severe osteoporosis. I had Hashimoto's thyroiditis another autoimmune disease which my doc says has cleared up but I'm still on levoxyl for low thyroid. I also have fibromyalgia and chronic fatigue syndromes which hit many people with already trashed immune systems. Good luck to you.
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