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Old 07-30-2013, 11:18 AM   #1
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Diagnosed with Lupus yesterday

Hello All-

I had been having some flares of pain and swelling in my feet and hands that sends me to the ER for steriod shots. Pain and in joints labeled as arthritis. I have had chronic pancreatitis with no known cause after complete workup. After being pregnant 9 times and having 3 children. Alopecia almost every 1-2 years. This last time was the worse, took out the entire back of my head. Was seen in the ER for chest pain and the dr said I hear rubbing this is pleurisy. Saw a neurologist for MS workup keep having pain when I took deep breath and someone mentioned it could be an MS with all the other neuro issues I was having. He so happened to do an EEG when I told him about my loss of awareness and headaches, he saw that I was having seizures. He then wanted me to go to a big university to get a complete workup since I get care at VA to figure out my issues since they were all over the place. I went to Duke and saw an MS specialist and he said after bloodwork and Spinal Tap no MS but my serum IGg was high 1900 and so was my IGg subclass 1. Positive ANA and elevated CRP. Seeing a Urologist for my kidneys and bladder issues blood and protein in urine recurrent UTI's in the past. I see a Dermatologist for Hidradenitis Suppuritiva and a GI for my pancreas and IBS. An ENT for nose sores. Spontaneous fevers of an unknown origin. I saw my Rheumy yesterday and she diagnosed me with Lupus. I had told my husband the day before that I thought that was going to be my outcome. She put me on Plaquenil, was already on Zanaflex for chronic muscle spasms, predisone, and calcium. She asked why did I wait so long to tell her about all these things. I said because when I have mentioned them to other specialist they tell me they mean nothing. She said well I'm the specialist that they do mean something to. I was seeing her already for Fibromyalgia and Raynaud's.

 
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Old 07-31-2013, 03:05 PM   #2
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Re: Diagnosed with Lupus yesterday

Hi and WOW. I'm sorry for your dx but glad you're finally on meds appropriate to your condition. That it took so long is just awful. (It took me a long time, too, and I didn't have as many chronic issues.) My rheum says pretty the same thing, btw, that most doctors just don't "get" lupus.

Did you get copies of your labs? And did she lay out the criteria on which she based her diagnosis? I'd want to know everything she found positive, both criteria and positive labs. (I'd keep those labs & notes in my files, in case I ever had to change doctors.)

I'd also ask if she tested you for antiphospholipid syndrome (APS), the blood clotting disorder. Hearing that you've had 9 pregnancies but only 3 children should make a rheum test for APS (if she didn't already), since one of its symptoms is recurrent miscarriage. And APS can also cause neurological problems like TIA's (stroke warnings), flat-out strokes, etc. To read the basics, look for its "sticky post" (permanent info post), which is located with the other "stickies" just above the user threads.

As soon as you read the APS sticky, PLEASE CALL YOUR RHEUM to ask about it. This is esp. important because treatment for APS is Coumadin, a *different* med than those you've been given for the lupus.

Again I'm sorry for your struggles, but glad you got help & glad that you have your 3 children! Please let us know what you learn when you talk to your rheum, and also how you're faring. Also, many libraries have lupus books written for patients; I'd definitely borrow those & read more. Looking forward to your updates & sending best wishes, Vee

 
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Old 07-31-2013, 04:12 PM   #3
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Re: Diagnosed with Lupus yesterday

That day she sent me for more blood work than she had the first time I saw her. She repeated some and added new ones. I will check my labs Friday to see if this was done. I get care at the local VA Hospital so appointments are 3+ months out and that is the soonest. Sucks I need insurance bad, but with not working for the past four years I am grateful I do have something. I am going to go through my Gyno records to see if the test has been done. I believe so because I remember a dr talking to me about it before. Yes 3 out of 9 and they are all pre-term. Me going pass 8 months was the laughing joke at he dr office they were born 33-35 weeks. They knew if that happened I would lose it. I ultimately had a hysterectomy at 33 due to Adenomyosis. That was a pain.

Vee thank you for your response. I have been dealing with this for four years. My last pregnancy put me in a chronic state of illness. Before that it was here and there and manageable on my own. 4 years of drs telling me it was in my head and so forth. Me going to the ER and them saying here's the lady with the polyarthralgia again. Just take some Ibuprofen, Meloxicam, Diclofenac, or whatever and you should feel better.

The first thing my husband said was are you going to take the medicine. Yes now that we are treating a disorder and not a bunch of symptoms. Then he said we need to get my 11 year old son checked out because he has the same issues I had as a kid. Pain and swelling in joints, fevers, nausea, and infections. He has seen a Pediatric Rheumy for Juvenile RA they came back negative. The first one we saw said there is something wrong with this baby but I will need time. The 2nd was so abrupt. He looked at him and said I don't think he has JRA... So I said well can you check for other things because this isn't normal for my child to miss school like this and just be ill and in pain. He said he didn't see the need and sent me back to his PCP. Of course I have asked for a referral to somewhere else.

No it's not what I wanted to hear but I can now be more proactive and better manage my health now that I have an appropriate diagnosis.

 
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Old 07-31-2013, 06:10 PM   #4
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Re: Diagnosed with Lupus yesterday

Hi again. Re: your 11-year old son, there's another sticky post that might be helpful, the one with criteria: look for the SECOND section with so-called "alternative criteria", which are things that occur earlier in life in people who LATER develop lupus. (Like your son & you, I also had varying problems from early childhood onward, many of which are on that list.) I'd actually take that list along when you next take him to a rheumatologist. (Can't hurt. BTW, the author of the alternative criteria is one of the best-known lupus experts in the world.)

Let us know what you find out about any previous tests for APS, too. Even if you've been tested in the past, I'd want new tests done, especially now that you know you have lupus. (AI's can "run in packs", as one poster here phases it, and APS can definitely co-exist with lupus. Plus some symptoms you cited surely seem APS-like.)

With so many things going on, I'd probably buy notebooks to keep individual health logs for each of you. (I actually kept a better notebook for our DOG than I did for myself. None too bright on my part.)

IBS. I forgot to say earlier that I had hideous IBS-like problems for 20+ years. Numerous GI tests didn't find Crohn's, Celiac, UC, etc. I was treated as though I were head case, and Librax (etc.) didn't help. What did help me was Plaquenil: I haven't had a true GI bout since starting it. Here's hoping you'll do as well, or better.

Re: sun. Were you warned that UV can trigger or worsen lupus flares? I wear hats, long sleeves and trousers, sunblock, and avoid prolonged exposure to midday (10 AM to 4 PM) sun. I really miss the sun, but I know I'm extremely photosensitive & have no choice.

Re: your last 4 years of constant issues. My rheum says lupus loves hormonal fluctuations. With pregnancy and hysterectomy, I bet your hormones have been all over the place. Also, I think the rate at which lupus comes on varies greatly. I know a woman whose kidneys failed suddenly at age 16, BOOM; and others, like me, who took years to drop to a certain point, stage by stage.

Keep reading and feel free to post whenever the mood strikes. While we're just patients, there's decades of cumulative experience and wide variety in the discussions here, so you'll definitely find kindred spirits. I'm really glad you found us. Stay in touch, OK? I'll say bye for now, hugs, Vee

 
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