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Charley10
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/24/2010 2:17 PM (GMT -7)   
Hi Everyone!
 
I'm 44 yrs. old and was just diagnosed with a positive ANA on 3/22/10 after multiple testing because my liver enzymes have been elevated since last summer.  My primary dr. told me I have lupus and I just made an appointment with a rheumy dr. but can't get in until 4/16.  Since last summer I've had severe swelling in my hands, feet, ankles, knees, elbows, weight gain, extreme fatigue, and more recently have severe shoulder pain/ swelling/ numbness and lower back pain to the point I could barely walk.  My primary gave me a cortizone shot which seemed to help a little and I'm now on 40 mg of prednison a day.  Now I've been having low-grade fevers.  I'm so glad I found this site and have been reading all the posts!  My question for you all is I realize that I might not have lupus without having the DNA/ENA autoantibody panel, but do you think with all my symptoms that this could really be lupus?  I had a rheumatoid factor with reflex titer test which came back negative. 
 
Thank you for any feedback you can give!  I just needed to put this out there so I don't worry myself sick!
 
Charley

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 3/24/2010 3:18 PM (GMT -7)   
This is from AmyTx:

you can have lupus without the RF coming back negative.. theres something going on and most of your questions will be answered with your rheumatolgist.. i certainly hope your pain gets under control so the appointment doesnt seem so far away.. big hugs.. i was diagnosed with lupus when i had no symptoms.. i asked my doctor about my white blood cells being low and he tested me..

Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


I think AmyTx meant to post this as a reply to Charley10?
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/24/2010 9:42 PM (GMT -7)   
Hi Charley welcome to the group. Of course no one can tell you what is wrong but it certainly sounds like somthing is going on. I would like to give you a few tips to seeing your rhumy though.
First be greaful your appt is so soon. It took me 4 months to see one of my rheumys. I say 1 because I have had 4 or 5 I lost count. I have had some total jerks. and had some that said nothing was rong and had some say it's my liver. Frankly after 4 years I am no more certain then the first day I walked in the doctors office. Most of the meds. that are taken at least in the beginning are usually pretty much the same. plaquenil and predisone. If your doctor does nothing to help alleviate your pain you need to keep looking for another dr. If he doesn't take you seriously again another dr.

Ok some little tips. when ever you have swelling or a rash or anything that is abnormal you need to take a picture and write about it in a note book. I don't car e your thumb was swollen for a month. Just about the time you go to the dr they have a tendency to go away.
Take your temp at least twice a day and write that down. You might not notice but it's not unusual for lupies to run a low grade temp. 99.6 ect.
Do some reseach, ask questions on here that you might want to discuss with the rheumy and keep notes of it. If you don't you will probably go blank when you get there.
I have had dr. make me angry others make me cry. others make me nervous. But you will do fine. I sure others will have some tips for you.
anyway hang in there. we are good people. (well at least I am) I'm just a jewel, plus I'm humble LOL. Just kidding there is a ton a compassion here.
so ask away.
hugs
carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 

Post Edited (okie) : 3/24/2010 10:49:42 PM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/25/2010 7:57 AM (GMT -7)   
Charley, we can all relate to the journey you're on to find a diagnosis and get the right treatment so that you can start to feel better. I hope you like your rheumy and that they take your symptoms seriously and get to the bottom of what's wrong.

Check out the Resources page at the top of the main page. You'll find lots of good info there, including how to prepare for a doctor's appointment. It will tell you, among other things, like Okie said, to keep a detailed list of your symptoms, all your previous dxs, a list of the meds your're on, and copies of your past medical records. If you walk in armed with all of that you're doctor will be impressed and it will make it easier and faster for him or her to begin to make a diagnosis.

I hope you'll stick around here. We're a family that supports each other and is there for one another.

Good luck with your appointment.

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

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


Charley10
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/25/2010 8:36 AM (GMT -7)   
Thank you, thank you, thank you all for answering my post and giving me some great tips on what to do! Again, I am so glad I found this site and this forum to get information with this disease. I know I have a lot of homework to do since I knew absolutely nothing about Lupus until Monday... I have 3 kids, two of which are 12 and 8. My oldest is 21 so I have told her, but not my two youngest. They know I've been sick for awhile, but I just don't know what to tell them yet... I don't know if they will understand. Have any of you had this situation? My husband has been very supportive, (thank God!) and is relieved that my sickness has a name now.

My husband and I are taking my oldest to Las Vegas for her 21st birthday this weekend. I go for another cort. shot tomorrow so hopefully I can walk around with her and show her the sites! I'm keeping my fingers crossed that I can do that without too much pain.
Thanks again everyone! I'll post again soon! Charley

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/26/2010 2:26 AM (GMT -7)   
Hey Charley we're glad you found us too! I hope the cordizone shot works well for you. I had a back problem for a long time my doctor gave me a shot and I never had it again. I know I was lucky but I was also greatful. Not to many meds work that well. Oh about that list. Even if you are getting things like peeling finger tips or hang nails or little red spots on the palms of your hand just anything that seems like nothing to you may be very important to your doctor. Just try to think back over any thing that has happened out of the ordinary.
hugs
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 

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