Newbie in Lupus Limbo

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kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/23/2008 7:28 AM (GMT -7)   
Hello!
 
I thought I would post over here, because I am in lupus limbo and need to get any info, advice, and support I can get.  I usually post with the fibros, since I HAVE been dxd with that.  I hope y'all don't mind if I hang out over here for a while.
 
Anyway, I have a lot of the classic symptoms of lupus-joint pain, thinning hair, malar rash, etc.  My bloodwork has revealed 2 different positive ANAs (I know that this doesn't necessarily mean I have lupus) and some other positive test that has something to do with smooth muscles-something with my liver.  I am still waiting for all my other bloodwork to come back, and my next rheumy appointment isn't until the 15th.
 
I am having these weird headaches-which I originally thought were migraines-and they may be.  But, after doing some research, I've learned that there is something called Lupus Headaches.  BTW-my symptoms include blurred vision (like, bright spots blocking my vision), pain above my eyes, and extreme nausea.  So, I know it could be migraines.
 
Alrighty, I have babbled enough-for now, anyway. tongue

FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/23/2008 8:53 AM (GMT -7)   
Glad you decided to join us!

There is a lot of information about lupus available in the links at the end of my signature, as well as what you can pick up from just reading the threads here.

I don't know if you've seen a rheumotologist, that's who usually does a lupus diagnosis...might consider it if you haven't already. Meanwhile, the 4 of 11 link describes what the usual presenting symptoms include...come on back once you get specific questions!!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/23/2008 9:33 AM (GMT -7)   
Welcome Kelly. I really hope you can see a rheumy who has a good knowledge of lupus (not all of them do). The first rheumy I saw discounted my positive ANA and other symptoms and said I had fibro. Over time I developed more and more lupus symptoms but he ignored these too. I finally saw a different rheumy that someone who had lupus recommended and got a diagnosis and was finally started on meds that gave me back some quality of life.

As I'm sure you know, lupus can be so hard to diagnose because it's symptoms mimic so many other diseases too. There are quite a few members here who have both fibro and lupus, so it's not uncommon. The thing with your liver and your muscles might be related too - there is an autoimmune hepatitis, or some people call it lupus of the liver.

I know how frustrating it can be to be in diagnosis limbo - I was there for quite a while. There are other people here who are also struggling in limbo land, so you are in good company. Please continue to post and ask any questions you might have - it can all be very hard to sort through.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/23/2008 9:45 AM (GMT -7)   
Lynnwood & hippimom,
 
Thanks for the feedback.  To clarify, I have seen a rheumy-he's the one who dxd me with fibro in June.  I've had tons of other bloodwork done-and I'm supposed to get those results on the 15th.  I do think I have one of those rheumys that doesn't have a great knowledge of lupus.  He won't give me a straight answer, so I am left wondering.  Why can't docs just have the nerve to say, "I don't know what's wrong with you?"  I am about to move home (I'm in SoCal now), and I'm hoping to find a rheumy who knows more about lupus (and fibro, too).
 
Anyway, thanks for the warm welcome.  Oh, hippimom, thank you so much for telling me what the "Lupus of the liver" is.  When I asked my rheumy, he just said, "Oh that just means that you have some antibodies in your blood."  LOL-I still don't understand what that means. confused


FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson

Post Edited (kelly71) : 7/23/2008 12:43:57 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/23/2008 11:23 AM (GMT -7)   
Oh, my...that is a terrible answer to a serious question! Any good doctor would tell you what it means in terms of liver health and what to expect and how to keep it healthier, if possible.

As for a "real dx", many of us never get one, as autoimmune disorders are so intertwined. As long as they are doing as many preventative measures as possible, and are addressing & treating your symptoms, .... life is good.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 7/23/2008 6:07 PM (GMT -7)   
Hi Kelly, I can surely relate to the frustration of trying to pin down a diagnosis. I have fibro, too as well as CFS - and now it looks more and more like lupus is a distinct possibility. I think sometimes the fibro/CFS disguize the autoimmune issues, unless you have definite lab results. I have a positive ANA, relatively high & a low white cell count - 2 of the 11 criteria. My liver enzymes fluctuate, but just got extremely elevated with what could be a flare - or a simple infection. I'm awaiting bloodwork results as well. Hang in there - this is a great forum with lots of good advice from good people who understand the difficulties. And I would agree with the others - a GOOD rheumatologist is pretty essential. If yours doesn't take you seriously or answer questions appropriately - find another!
Good luck to you - Lucy

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/24/2008 9:08 AM (GMT -7)   
I agree about finding a good rheumy when you move home, or sooner if it's going to be a while before you move. One way to try to find a rheumy who knows about lupus is to try to find a lupus support group in your area (you can go to lupus.org and find locations) and ask the members there for referrals.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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