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Old 04-29-2006, 11:56 AM   #1
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Question I'm honestly convinced now that I DO have Lupus..

.. even though no one will diagnose me because of my consistently negative ANA results.

I posted a thread a little while back asking a few questions, but I just thought of some new things!

Just a brief history.. I've been officially diagnosed with Fibromyalgia for a while now and had accepted this diagnosis until recently when I had some bloodwork done while I was in what I would normally consider a "major fibro flare" and everything was abnormal (the very first time I've ever had bloodwork done when I felt that bad). My WBCs w/differential, RBCs, and platelets were all low. The test was repeated 2 weeks later and everything went back up to the normal range except for the WBCs and platelets. My WBCs are down from my usual 7.2-ish to 3.2-ish. That tells me that this is not just Fibromyalgia..

I've read where some people have mouth and nasal sores with Lupus.. would those open cracks in the corners of your mouth count as mouth sores? I get these all the time and they hurt soooo bad that it's hard for me to eat. And the nasal sores.. what do they look and feel like? I've dealt with nasal sores for a while now actually, but never thought to bring it up to my doctors (or even the mouth sores for that matter). It starts as just a sore area inside the outer part of my nostril.. it will swell up like a big pimple type of thing, then become an open sore that eventually scabs up. It takes roughly a week or a little over to finally heal.

Pleurisy.. I think I might have this, but it may be Costochondritis. All I know is that a few times a week, I have chest pain and sometimes in my back around the same area. It hurts to breathe, and I can press on the sore area and reproduce the pain. I haven't brought this up to my doc either..

For the last few weeks I've had a problem with my fingers burning for no reason. Suddenly, they will get really hot, even to the touch, and they turn bright red. It usually doesn't last very long.. I think the longest has been maybe half an hour. This happens at least 7-8 times a day. It's reaaaaaaaaally annoying. Sometimes the bottoms of my feet will do it as well, but not very often at all.

I used to only have muscle pain, fatigue, and just a generally ill feeling, but now, I have more joint and bone pain and fatigue than anything. I feel like I have a toothache in my bones. My shins and forearms are the worst. Nothing helps this pain at all..

What the heck do I do when the docs are completely STUCK on the stupid Fibro diagnosis???? It seems like every single thing that I have a complaint about, they say it's because of the Fibro.. which is the main reason I don't bring this stuff up to them. The more I complain, the more they seem to think I'm a whiner. But the darn bloodwork SHOWS that something else is going on! I really want another ANA and all those other tests they can do.. and I want these done when I'm in "mid-flare" like I did when I had the other bloodwork that came back abnormal. But I know they're going to think I'm nutso

Last edited by Dee74; 04-29-2006 at 11:59 AM.

 
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Old 04-29-2006, 01:31 PM   #2
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Re: I'm honestly convinced now that I DO have Lupus..

Dee it is very common to have overlap problems such as fibro and lupus or other autoimmune diseases. Unfortunately for you with the fibro diagnosis first everything that bothers you will be lumped into that catagory. Try going to another rhuematologist and asking him to treat you for the joint pain etc. Let him or her know that your fibro (if you bring it up) is being treated by another doc and is under control and not causing you a problem at this time.

My fibro is being treated by my family doc and I was actually referred to a rheumy when my ANA went up and he treats me for joint problems etc. He still has not made the lupus diagnosis and refers to my pain as connective tissue disease but I always bring up the problems I have and one day it will all connect or when I have the opportunity I will see a new rhuemy whichever happens first.

Glojer

 
Old 04-29-2006, 07:46 PM   #3
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Re: I'm honestly convinced now that I DO have Lupus..

Dee, I think it makes sense to have ALL the tests, as you just wrote. Not just ANA. Maybe not even mid-flare---maybe more at the start of a flare? Dunno... Maybe someone else can comment on the timing of tests.

When I had skin biopsies & bloodwork, I was told to try to get them done early on, at the start of a rash & other symptoms.

I was always ANA-negative---even after turning positive (finally) for anti-Ro. This happens in the SCLE subset, I was told, maybe 30% of the time (or so). Reason? It's thought that anti-Ro can "mask" the ANA in some people.

Like you, my shins & lower arms have burned from the bone outward for a long time, since age 13 or so. (I'm now 53 .)

Maybe a new rheumie, a really sophisticated one, could help? I turned to a teaching hospital rheumie after 8+ years of rashes & other worsening problems, then got an answer & treatment started within one month.

Bye for now. Sympathetically, Vee

 
Old 04-30-2006, 09:38 AM   #4
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Re: I'm honestly convinced now that I DO have Lupus..

Hi veej how are you doing? I have been so busy with hubby and his cancer and now he is very ill from some muscle problems from his cancer, it is called dermatomyositis if you have ever heard of it. My brother was diagnosed with cancer and the list goes on...soooooo all I have done lately for myself is just to stay out of pain.

I did want to say that your advice for the teaching hospital is such a good idea. It sounds better and better to me all the time. We have two excellent teaching hospital and universities in the city and I am convinced that is what I will need to do when time allows me to. You always have such great advice for everyone!

Glojer

 
Old 04-30-2006, 03:38 PM   #5
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Re: I'm honestly convinced now that I DO have Lupus..

Glojer, Hi! I've been wondering about your hubby & you. A neighbor of mine was Dx'ed with dermatomyositis while I was in the midst of trying to get answers myself. She & I had many similar things going on. I hope your hubby is getting some good help on it; he already has too much on his plate.

And I'm awfully sorry to read about your brother being Dx'ed with cancer, Glojer. I hope he's getting the best help around, too.

I'm doing OK in the main. A low year, with several deaths in my family---both expected but nonetheless very hard to bear. My moods keep shifting wildly.

About teaching hospitals: I'm sure the experience can vary widely. But I gottta say, I knew within 1 minute that I'd made the right change. The timing was good, too, as I showed up with lots of nice bright red circles (my rash!). It was my best "batch" ever.

I'll keep thinking of you all. With my best wishes, Vee

 
Old 04-30-2006, 06:09 PM   #6
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Re: I'm honestly convinced now that I DO have Lupus..

Veej sorry about your family, even when expected you can't avoid that feeling of loss.

Did your friend recover from her dermatomyositis? My husband is so week from the muscle inflammation and of course his red skin and swelling. The weakness and pain in his muscles has almost overtaken him, the itchy red skin we control with topical creams. I don't think he really had a chance to recover from the chemo before this hit him hard.

My brother is being treated at one of those great teaching hospitals, so we are sure he will make a full recovery. Well we have a positive attitude anyway. Truly if my hubby doesn't make progress with his rhuemy I will be carting him to the city!!!

I will think good thoughts for you and hope that time will heal your sadness.

Glojer

 
Old 05-01-2006, 12:49 PM   #7
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Re: I'm honestly convinced now that I DO have Lupus..

Dee, How are you doing? I hope you're well into "Plan B" (or is that "C", or ???) Anyway, just checking on you. Bye for now, Vee

 
Old 05-01-2006, 03:57 PM   #8
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Unhappy Re: I'm honestly convinced now that I DO have Lupus..

Well, I'm "doing".. thanks for asking, though

Honestly, I'm not feeling so well at all the last couple of days. I feel incredibly run down, constantly tired, yet continue to toss and turn at night even though I'm on 75mg of Elavil and also 20mg of Baclofen for nighttime pain relief and sedation.. Now, I have a nasty outbreak of what seems to be coldsores INSIDE my left nostril of all places. I called my doc's office as soon as they opened this morning and they wanted me to come in to verify it.. my GP wasn't in today, so I saw someone else.. she said that she believes them to be coldsores as well (I do have the HSV-1 virus as verified by blood test, I just have no clue where since nothing we've cultured has EVER come back positive), so now I have to add Valtrex into the mix of meds. It's not the same type of sore that I was talking about above.. these are completely different. I've had them before and just always assumed they were coldsores and treated them as such. Normally though, they're right in between my nostrils and maybe one tiny blister will be at the entrance to my right nostril. These suckers are up IN my nose this time and it had me a little worried. Really moist areas and coldsores are not a good mix at all.

Yesterday, I had a rough time with lightheadedness. I almost passed out 3 different times. I woke up with a headache this morning and was really lightheaded for about an hour after waking, and I've been pretty ok since. I get a little dizzy feeling when I first stand up, but it goes away pretty quickly.

I have an appointment scheduled for Monday morning with my GP to go over all of my past blood tests to see what my usual "normal values" are and compare them with the results of the latest tests.. I just switched over to her clinic in October and she just now got my medical records from my old doc (who was a moron, btw). She's also referring me to a hematologist and I'm sure I'll be put through god only knows how many blood tests then.
I'm also going to ask her to refer me to a different rheumatologist.. my last one was a major jerk from you know where. Hopefully I'll get somewhere with a new one!
Hubby is going in with me and he says that he wants to be heard as well (LOL ooooh boy, this should be fun).

I appreciate you taking the time to talk to me about all of this.. Glojer, you too!!!!

 
Old 05-03-2006, 01:25 PM   #9
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Re: I'm honestly convinced now that I DO have Lupus..

Dee sounds like you are on a roll, hope all works out with the new docs. I know how frustrating all this can be sometimes when you can't get a diagnosis.

I am finding out that a lot of rhuematologist are just jerks or just can't see pass the end of their nose or should I say the end of the blood tests. It seems if it doesn't show up in the blood work they can't figure it out. Although I have my problems with mine, I didn't realize how lucky I am to at least have a rhuemy that will answer every question I have and treat me like I am the only patient he has while I'm there.

Doesn't make him any less frustrating sometimes, but after the rhuematologist my hubby has I am lucky.

Keep up posted on how you are doing.

Glojer

 
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