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Old 08-15-2007, 05:09 PM   #1
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Diagnosed with Lupus/Now I don't have it?

Hi everyone,

Last May my PCP(also a Rheumatologist) diagnosed me with Lupus. I had a high ANA (1:640), positive for anti-SSA and anti-SSB, positive rheumatoid factor, high sed. rate (as always), thinning hair (normal thyroid), rash on cheeks and nose, achy joints, extreme fatigue, and painless blisters on the roof of my mouth that went away after a few days.

After switching to another PCP I just saw a new Rheumie at a teaching hospital yesterday. She doesn't think I have Lupus and that the extreme pain I've felt in my joints is due to my Fibromyalgia because there is no swelling. She also says the rash on my face is Rosacea. However, she says that if I decide to have children it will be high risk due to one of the lab results and that I need to avoid the sun, too. She is running more tests and thinks I may have Sjorgrens Syndrome and maybe another connective tissue disorder. She also said if I had Lupus it was a mild version. She also wanted me to see her in 3 months.

Would I be wrong in seeking a second opinion from another rheumie at the teaching hospital? I can't wait three months to find out what I have or don't have. Has anyone had similiar experiences? I'm so frustrated but don't want to give up in finding the answers. Thank you for anything you can share.

 
Old 08-16-2007, 04:27 AM   #2
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Re: Diagnosed with Lupus/Now I don't have it?

Hi, Angie. I suspect many doctors want to see your "criteria" with their very own eyes. This can be awful, given that symptoms (diagnostic criteria & all other) can wax and wane---and can be almost impossible to recreate it you are already on meds & are avoiding sun, too. I also suspect some doctors get their wee thrills by overriding Dx'es made by OTHER doctors. But then there are new doctors who step in and raise valid questions.

In your shoes I'd want comfort on a few issues, such as

1. Is new rheumie aware that there *is* such a thing as Ro-positive lupus? (If not, RUN!) And is new rheumie aware of the SCLE "subset" of SLE, for which you do NOT have to meet 4 of the SLE criteria, though many patients do? (If not, RUN!)
2. Does new rheumie have access to all your old labs & test results? Has new rheumie read same?
3. Why, oh why, does new rheumie think joint swelling is "required"? In his hardcover, Dr. Wallace quotes stats: he says 80-90% of lupus patients have arthralgia, but less than half have actual arthritis (meaning visible swelling).
4. Is new rheumie doing the most specific tests for Sjogren's, like the Schirmer's test, Rose Bengal staining, or lip biopsy? (To me, it does makes sense to rule Sjogren's in or out, as it's NOT identical to lupus & can take different, dangerous pathways if gone unchecked.)
5. In the meantime, what is new rheumie doing about your meds? Are you on any yet? Is she discontinuing them until SHE is sure?
6. Is new rheumie the type who thinks "mild lupus" doesn't need treatment? (If YES, then RUN!)

Overall, how do you perceive what's happened so far? Do you see it as scientific inquiry, done civilly and with concern? Plus, new rhuemie has already done some new tests, right? So maybe you can hang in there until your latest tests are back, AND also try to ferret out some of the questions above?

I hope others will chip in more, too. All my best to you. Sincerely, Vee
(P.S. My newest GP tried to ship me to a new rheumie, AND she ordered me to go out into the sun so that SHE could see if I got a rash. To each gambit, I smiled sweetly and responded with 3 short words: "When pigs fly!" )

 
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Old 08-16-2007, 07:16 AM   #3
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Re: Diagnosed with Lupus/Now I don't have it?

Thank you, Vee!

I needed some validation. I put a call in to my new PCP and will ask for someone she recommends. I'll keep you posted. Thank you so much. Your words are always a comfort to me.

 
Old 08-16-2007, 08:17 AM   #4
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Re: Diagnosed with Lupus/Now I don't have it?

Hi, Angie. I'm glad to see you're not retreating. That is the one & only way to guarantee failure. During my years of trying, I took a little time out, but solely to wait until I had a fresh batch of new problems (for me, the skin rashes were undeniable), enabling a new dr. to see me in "full bloom".

And it can't hurt to READ, READ, READ. You ask better questions & gain a better sense by which to judge whether what you're being told makes sense or not.

Have you read up on Sjogren's & how it is Dx'ed?

And never forget that there ARE fine drs. out there, OK? Please let us know how you are faring, OK? Hang in there! Ever onward! GOOD LUCK! Always, Vee

 
Old 08-16-2007, 09:55 AM   #5
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Re: Diagnosed with Lupus/Now I don't have it?

Quote:
Originally Posted by Angie10 View Post
Hi everyone,

Last May my PCP(also a Rheumatologist) diagnosed me with Lupus. I had a high ANA (1:640), positive for anti-SSA and anti-SSB, positive rheumatoid factor, high sed. rate (as always), thinning hair (normal thyroid), rash on cheeks and nose, achy joints, extreme fatigue, and painless blisters on the roof of my mouth that went away after a few days.

After switching to another PCP I just saw a new Rheumie at a teaching hospital yesterday. She doesn't think I have Lupus and that the extreme pain I've felt in my joints is due to my Fibromyalgia because there is no swelling. She also says the rash on my face is Rosacea. However, she says that if I decide to have children it will be high risk due to one of the lab results and that I need to avoid the sun, too. She is running more tests and thinks I may have Sjorgrens Syndrome and maybe another connective tissue disorder. She also said if I had Lupus it was a mild version. She also wanted me to see her in 3 months.

Would I be wrong in seeking a second opinion from another rheumie at the teaching hospital? I can't wait three months to find out what I have or don't have. Has anyone had similiar experiences? I'm so frustrated but don't want to give up in finding the answers. Thank you for anything you can share.
Hello! My name is Andi and I have been diagnosed with Congestive Heart Failure and Interstitial Cystitis only to have those 2 overturned within six months for the heart and a year for the bladder. The Urologist was very condesending to me and seemed to think I had 'made it all up?' I don't know why my OLD G.P sent me to 2 different Urologists.......I switched G.P's real fast after than and as I've stated in another post, my new guy IS 'my life line' for he realized Sjogren's and has been doing his best to get me into the right medical pipe line.
Yup, specialist's can be down right condesending. Stiff upper lip to them all and don't let them try to destroy your sefl esteem. YOU know what's going on in your body. By the way the second bout of Angio-Edema [facial & oral swelling] I took a picture. Now I show it to every doc I'm sent to. They truly do seem to need 'visual symptoms' to substantiate our 'subjective symptoms.' Don't let them get you down.

 
Old 08-17-2007, 03:14 PM   #6
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Re: Diagnosed with Lupus/Now I don't have it?

Thank you Vee and Andi!

I have been reading so much about Lupus since the original diagnosis that when I see that I match four of the criteria and feel worse than I ever felt with the Fibromyalgia I think there is more going on here. Every doctor I have had has always fell back to - Oh, you feel this way? It must be the fibro. When I told my previous PCP/Rheumie that I was experiencing itching from the Plaquenil, she asked me if maybe the itching was caused by stress. I told her about the pain in my fingers from the middle joint to the palm and the fact that my fingers and toes were always so cold, she said that it was the Fibro.

I also have been reading up on Sjorgrens and wondered why this new rheumie ordered a ton of blood and urine tests but did not refer me to an eye doctor or ordered a salivary gland biopsie. Also, how can she say to me that she thinks I have some connective tissue disease when lupus is a part of that group? I don't have scleroderma or RA so there's not much left in the connective tissue category that I'm aware of.

My new PCP called me back today and gave me the name of a couple of rheumatolgists that she recommends so I am going to set up another call on Monday. Even if the new doctor confirms that I don't have Lupus, at least I will not be left with so many doubts and with a doctor that has no bed-side manner. Thank you, both, for you input!

 
Old 08-17-2007, 03:37 PM   #7
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Re: Diagnosed with Lupus/Now I don't have it?

Angie, Connective tissue diseases also include dermatomyositis & polymyositis. Also, mixed connective tissue disease (MCTD) and undifferentiated connective tissue disease (UCTD). And some forms of vasculitis associated with positive ANA. And "rhupus". (And there may be more I've never heard of.)

It truly requires both "art" and "science" to make a good diagnostician. So I hope your next appt. clarifies things & eases your mind. Hang tough! Sending my best, Vee

 
Old 08-17-2007, 04:10 PM   #8
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Re: Diagnosed with Lupus/Now I don't have it?

Don't you just love the way that everything is due to "stress"????!! I hear this time after time after time and it's been insinuated to me in the past as well. I also find it strange that many people with so many of the symptoms or test results leaning to lupus (or other autoimmune disease) seem to take years to get diagnosed, if at all; then I hear about other people (like people that are related to or friends with people I know) who get diagnosed with Lupus instantly for really odd reasons. Such as a woman was having bad headaches constantly, that was her only symptom, goes to a doctor and gets diagnosed with lupus right away. Someone else had back problems and was diagnosed with lupus right away. It doesnt make sense, does it? That someone with a list of symptoms from the lupus criteria has a hard time getting diagnosed. It's all so frustrating.

 
Old 08-17-2007, 09:05 PM   #9
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Re: Diagnosed with Lupus/Now I don't have it?

I hear you!! The waiting is very frustrating. Been there, done that. I think in cases like mine and many others the problem isnt not enough symptoms but sometimes too many. I had so many but they could also be attributed to other diseases as well. I was being treated. I received massive doses of solumedrol for my optic neuritis and transverse myelitis along with months so IVIG treatments and then oral steroids ever since but nothing to say, "the underlying condition that is causing all of your problems is ____" In my doctors defense, lord knows he tries and he has never blown me off. He has taken everything I have told him straight to heart. I think they get frustrated as well. I am very thankful that I have a doctor that didnt wait to put a name to it to treat me of lord knows how bad off I would be now.

Erin
Dallas TX

 
Old 08-18-2007, 04:56 AM   #10
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Re: Diagnosed with Lupus/Now I don't have it?

Thank you, Ladies!

Even if I don't have Lupus, I can do without a doctor that is rude to me and makes me feel like I'm taking up her time. My PCP recommeded a new rheumie and I am going to switch. I don't care how long I have to wait.

A few years ago my first ever gastroenterologist diagnosed me with Celiac Disease. This is an autoimmune disease that makes the body attack itself when wheat and/or gluten are ingested. I found out from another woman with the disease that it can take up to a year for the body to heal itself. After a few months on a gluten-free diet I still had problems (had IBS, too). He felt suddenly that I also had Crohn's disease and put me on a medication.

Well, the side effects were making me truly ill. What does he do - he has me double to dose because he thinks its a Crohns flare. I ended up in the hospital for 5 days. He had gone on vacation so another doctor was treating me. He took me off the medication and sterioids my doctor had put me on and said I didn't have Crohns.

I ended up seeing a third gastroenterologist not in my first dr.'s practice and she also confirmed that I didn't have Crohns. I ended up switching to her in a heart beat.

This is why I have no qualms about switching to a new Rheumie and essentially getting a third opinion. It always feels like a gamble whenever I see a new doctor. I don't want to continue to see someone that is going to make me feel sub-human. If I don't have Lupus, great. If I do, I don't want a doctor that is going to shrug it off because it is "mild". My prayers go out to you all!

 
Old 08-18-2007, 05:05 AM   #11
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Re: Diagnosed with Lupus/Now I don't have it?

Hi, Angie. I did a many gastro consults & invasive tests multiple times. Was on GI-type meds for years, yet my problems continued. I never realized that an autoimmune could cause GI problems, but in my case I'm pretty darned sure that *was* the main cause, as my problems stopped on a dime after I started Plaquenil & began avoiding sun exposure.

So I'm glad you don't have qualms about doing more consults. If I'd known what KIND of specialist I needed, I'd have done more, sooner, myself. Wishing you good luck & quickly. We'll all be watching for your updates. Always, Vee

 
Old 08-20-2007, 07:19 AM   #12
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Re: Diagnosed with Lupus/Now I don't have it?

Hello Erin, Your response of having SO many symptoms that it was confusing is what has been my reality. After a 17 year search trying to figure it all out & my husband & I knowing it was more than just Fibro, it is good finally to have a name that brings all the crazy, wonky symptoms together under one illness [even though we'd rather not have it to deal with in our lives]. Again, it is thanks to the tenacity of the Family Doctor that we did not go crazy as he believed no matter what and kept treating, even when Specialist blew us off. It is because of this Family Doctor that I will now begin to be seen by the correct specialists.

 
Old 08-20-2007, 07:52 AM   #13
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Thumbs up Re: Diagnosed with Lupus/Now I don't have it?

Quote:
Originally Posted by Angie10 View Post
Thank you Vee and Andi!

I have been reading so much about Lupus since the original diagnosis that when I see that I match four of the criteria and feel worse than I ever felt with the Fibromyalgia I think there is more going on here. Every doctor I have had has always fell back to - Oh, you feel this way? It must be the fibro. When I told my previous PCP/Rheumie that I was experiencing itching from the Plaquenil, she asked me if maybe the itching was caused by stress. I told her about the pain in my fingers from the middle joint to the palm and the fact that my fingers and toes were always so cold, she said that it was the Fibro.

I also have been reading up on Sjorgrens and wondered why this new rheumie ordered a ton of blood and urine tests but did not refer me to an eye doctor or ordered a salivary gland biopsie. Also, how can she say to me that she thinks I have some connective tissue disease when lupus is a part of that group? I don't have scleroderma or RA so there's not much left in the connective tissue category that I'm aware of.

My new PCP called me back today and gave me the name of a couple of rheumatolgists that she recommends so I am going to set up another call on Monday. Even if the new doctor confirms that I don't have Lupus, at least I will not be left with so many doubts and with a doctor that has no bed-side manner. Thank you, both, for you input!
Hello Angie & Everyone Else on this Web page dealing with Sjogren's!!
Wow but is it ever great to have someone who understands & acknowledges ones perspective. I'm SO glad that I found ALL of you to chat with. I've joined the organization here in Ontario, Canada but have not been able to get out to meetings. I hope to have a long and wonderful relationship with all of you over time. It is GOOD to have input from all of you. Looking forward to getting to know you all! Andi

 
Old 08-21-2007, 05:07 AM   #14
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Re: Diagnosed with Lupus/Now I don't have it?

Andi, Just wanted to say HI & WELCOME. We'll look forward to getting to know you, too. Bye for now, Vee

 
Old 08-27-2007, 06:13 AM   #15
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Re: Diagnosed with Lupus/Now I don't have it?

Hi to all of you and you too Vjee. I'm not familiar w/how these work. Do I just go to the web site from time-to-time to see if anyone has posted something new?

 
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