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Not sure if I have Lupus

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Posted 11/6/2010 1:12 AM (GMT 0)
I am a 31 year old female. When I was nineteen a doctor told me I had sub-clinical lupus. Then again at age 24 a different doctor said I had sub-clinical lupus. Then about a year ago, again I was told I have lupus, but after running tests and my third bone marrow biopsy the doc sent me home with a clean bill of health. All three were hematologists. I have low platelets, low WBC, began having unexplained pain a month ago, besides my normal wrists and ankle pain (Doc thought it was fibro), I'm TIRED and depressed. Medication is helping depression. Sometimes a get a malar rash but it's very light just looks like a mild sunburn,my friends and husband think I just have a rosy complexion. Could be I guess. I don't have a positive ANA, although I did once when I was four. I guess like a lot of other people I would just like to know whats wrong me. And I guess someone I can relate to, that's why I'm here.
Posted 11/6/2010 7:24 AM (GMT 0)
Hi J.P., Have you been to a rumatologist(spelling?) anyway that is where your Dr. should send you if he thinks you have lupus. I was told I have Lupus was on meds for many yrs then to make a long story short i was sent to anotherRuma. that sucked at being a Dr and told i didn't have Lupus went down hill and insisted I be referred to another Ruma. and sure enough I do have Lupus and this I new all along I think that the meds I was on at the time put my lupus in Ramition and thats why the Dr. I went to thaught I didn't have it but that is what i think if that is true I don't know never asked, was just glad that after being in pain I hadn't suffered for many yrs back at the first befor I was told the first time anyway I was this way for 6 months and was told it was fibr. and I was depressed well I told them I might be depressed but I new from the info I found in line that i didn't have Fibro.I was so determined to get to the real reason weather it was lupus or what I new they had messed up!
Just don't give up keep being in charge if you know that they are wrong! I just had to tell myself each time (because i am not normally perstsent) that they may be the Dr. but you pay there wages.
Keep you chin up
waves of hugs
pugpuppy
Posted 11/6/2010 7:46 AM (GMT 0)
hello pugpuppy, just wanted to thank you for your reply.... its so nice to be able to tell my story to someone who understands.
Posted 11/6/2010 7:50 AM (GMT 0)
I hope that you are able to find out what is going on, I feel the same that there is someonr that knows what i have gone threw.
Posted 11/17/2010 1:42 AM (GMT 0)
Hi JP,

I ,like you, am looking for answers too. I am getting a second opinion for diagnosis and treatment options. keep me posted I want to know what you find out- Gretchen
Posted 11/17/2010 5:30 AM (GMT 0)
Hello hootyhu, thanks for your reply. Second opinions are always a good idea and third opinions, too, right? I hope you will keep me posted as well.

J.P.
Posted 11/18/2010 10:18 PM (GMT 0)
hey there...havent been on in awhile.well,went to the rhumy and he didnt do a thing,cept hes getting ultrasound of my hands.The test for lupus is positive,still have blisters on my scalp,now my chest hurts,and feel like I cant get enough air sometimes.Pain doc said she doesnt think its fibro,and endocrinologist said he thinks its lupus as it is in my family.Pain doc wants me to do cardio,Im like I cant hardly make it up stairs .I used to be a trainer so I know I need exercise but I hurt..and am short of breath.Still gettin my b12 shots,takin my vit d,usin my cpap machine(its very sexy)I get so swollen that people ask me if I have a migraine.any takers on my MYSTERY disease?
Posted 11/18/2010 10:21 PM (GMT 0)
oh yeah,have big red rash on cheeks,am hypothyroidism,am 45,female,tired,need to put some makeup on so I look like I am alive.
Posted 11/18/2010 10:25 PM (GMT 0)
Shoeless,

Lupus test positive, Pain doc says NOT fibro, endo says Lupus - sounds like Lupus to me!

However, if that is all your rheumy is doing then you need a second opinion. If you have lupus you should be on plaquenil, it is the only thing that is supposed to mitigate disease progression. Your symptoms should also be treated - can't go around short of breath and swollen up!

Yup, I recommend a new rhuemy who is familiar with Lupus -- goto www.lupus.org and check for a local chapter. The local chapter can tell you what drs are on their advisory board -- these are the rheumies who know about lupus.

Best wishes,
Posted 11/18/2010 10:28 PM (GMT 0)
yeah,Im in canada so gp is sending me to another rhumy-may be months tho.any take on the blisters? they really hurt.can I have a positive and not have lupus?is it a rarity er..
Posted 11/18/2010 10:41 PM (GMT 0)
yep,and I really forget everything..so ya get lotsa posts!lol-haveta be careful I dont laugh too much er I loose my breath.(sad but tru).It all started with a test that showed inflammation in my blood.I felt tired but I worked really hard.then about 2 months later I thought I was having a stroke at work.All the symptoms.I went home thinking I would pass.Some went away but I got weaker a weirder.I was on gabapentin,lyrica(thats great for about 50 pounds)then I asked him to check my b12.And it was dangerously low.that was 2 years ago...they said fibro..cfs...what a joke.They look at 1 thing like my hands..now hell probably treat me for artheritis and forget the rest!!thats not the way you spell artur-ritis is it?
Posted 11/19/2010 2:32 AM (GMT 0)
Wow, this is exactly the syptoms my husband has.  He has been diagnosed with an "undiagnosed autoimmune disease".  His platelets stay around, 20,000 his ANC about 0.5.  He has constant fatigue, goes to bed about 8pm every night.  He had a serious mouth ulcer a couple of weeks ago (Doc said it was a  Canker sore).  He has joint pains and muscle aches. Bone marrow normal, ANA negative, there was one report of an inverted CD4/CD8 ratio, HIV negative.  Everything negative.  When his blood is lower than average, he gets red watery eyes, weakness and almost a yellowish tint.  He also smells very sweet sometimes?  He had a period of really high thirst I thought he was a diabetic but blood sugar test was normal.

He was bitten by a black widow sipider 3 years ago, a year before symptoms started. He was in the hospital for 11 days total (ended up with a staph infection) he was oon vancomycin for a while and had a red man reaction but they kept it going.  His hematologist thinks the venom or drugs may have triggered the autoimmune response?

Any ideas?  We have never been to a rheumatologist.  Oh also, our sone was diagnosed with Crohns disease 2 years ago at age 7.

Posted 11/19/2010 2:39 AM (GMT 0)
is his test for lupus possitive too?mine was but thats all theyre saying.
Posted 11/19/2010 2:47 AM (GMT 0)
No one has every done a test for lupus? I'm not sure what the test is? The Docs just say it could be any of thousands of diseases, too many to test for. If he had a positive ANA I would bet on Lupus but its negative and no rash? I don't know but I wish he had more energy, he sleeps all the time!
Let me know how you do in your quest.
Posted 11/19/2010 2:49 AM (GMT 0)
sounds like chronic fatigue maybe.yeah,Ill keep ya posted.
Posted 11/19/2010 2:56 AM (GMT 0)
yes, you can have a positive ANA and not have lupus. but I think when a person has symptoms like lupus and also have a positive ANA it can be a good indicator of lupus. also there is no test that can say whether a person has lupus or not, doctors base diagnosis on a list of criteria, I believe now they say if a person has four of the eleven criteria then that person could be diagnosed with lupus.
Posted 11/19/2010 3:00 AM (GMT 0)
and that will take a dozen doctors to figure it out!sorry-Im a little fed up with it all.why give me meds for something I dont have.anyway-gotta run,have a great nite all!
Posted 11/19/2010 3:14 AM (GMT 0)
of course I'm no expert but there are a lot of web sites that are probably more accurate. Shoeless, hope you find a better rhuematologist. And Puddi I hope you are able to figure out whats going on with your husband. I also do not have a positive ANA and I've never been officially diagnosed but there have been several doctors who thought I may have lupus and thought more symptoms would likely appear. And unfortunately I've had more symptoms in the last year. so i'm in the process of finding a Rhuematologist.
Posted Yesterday 10:30 PM (GMT 0)
new news-wont be seeing the new rhumy as she wont accept me cause Im been seen by another.Canada sucks!how do you get a different opinion when they wont see ya!?the doc wanted this appt...@%^&*i!!!!
Posted Today 4:57 AM (GMT 0)
is it just that particular rheumy who won't see you because you've seen a different rheumy? or can you try to find one that will? i know you're probably fed up with it all!
Posted Today 2:36 PM (GMT 0)
no,I picked that one as she had really good reviews,so doc said sure,Ill refer youand its good we get a fresh look on things.but when they tried to get me an appt,they said no as Ive alredy seen someone.canada sucks like that....so I guess Im stuck with fibro and alot of swelling head blisters extreme exuastion etc.
Posted 12/1/2010 5:07 AM (GMT 0)
ya, i just found out today i can't be referred to a rheumy because i don't have an official dx, unless i can find one that will see me for fibro. and my NP said most will not see someone for fibro. it seems to me with all my symptoms that a rheumy would see me but i guess not. i will see a hematologist on the 7th maybe he can refer me to a rheumy. i don't care if i get diagnosed i just feel that whatever i have is progressing and i need a doctor who specializes in auto immune disorders.
Posted 12/1/2010 8:22 AM (GMT 0)
Hi J.P. hope you are feeling well.
I had my gallbladder taken out not sure if i posted that or not had infection between my liver and gallbladder YUCK!!!! feeling better that way, no more attacks thank goodness!!!!
They gave me a big dose of steroids befor surgery, pre thing they do if your on steroids. I have not been hurting in my joints as bad but had a real bad prob. with my face ears mouth and all over, I was red and it felt like fire in places, this was about a day after the surgery. After a fue doses of benadryl I was on the mends from that .
I think my body went threw so much trama that it wasn't sure how to act.


I am going to the Nero. in Jan. hope he can figure out why my balence sucks and my left leg won't go at times and my reflexes o the left side sucks I also just drop stuff at any time strenth is bad and the brain leaks stuff out all the time so I don't remember .....stuff so I hope he can find the leak and patch it.LOL i made a funny ....well I think so anyway...maybe not.

The Lupus well that I take one day at a time.
I lost my best friend and sister to lukemia, the sugery and Lupus not a very good combo. but I will have to pull myself togeather because my body just can't take all that at once as you I am sure you know.

I see I am on the babbles again, sorry!! Well hope all is well with you and thanks for your replies
waves of hugs
pugpuppy
Posted 12/1/2010 11:13 AM (GMT 0)
I hear ya JP!I have got a docs referral and she still wont see me!and the rhumy I have wont diagnose lupus.....everything points to that...my pain doc thinks I have it,and so does my endocrinologist.its not that I want it,but I dont want to be on various meds for nothing,ya know...?
Posted 12/1/2010 5:37 PM (GMT 0)
I don't understand why the Dr. won't diagnose when they know that you have it, even if they say they are not sure. I wish i would have become a rhumy, I would have dedicated my life to helping others and those special ones who don't get the help they need. I guess I just don't understand they have to know that the longer we don't have the meds we need to be on that the worse our health is ganna get and then when you do get a diagnoses because you have gotten so sick then you are on more meds then you would have been if they would have just diagnosed and put you on meds in the first place. This has to be a set up with the drug comp. LOL well probably not but....


Shoeless you are from Canada? Hw does the health care handle special Docs up there do you have to jump threw hoops to see one? I live in Or. so we live close LOL.


Well hope all have a wonderful day
Waves of hugs
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