Lupus?

[Tinkerbell23]

Lately i have been really tired, more then usual. my body hurts and i always have a low grade fever. the past few days my hands and feet have been numb and tingling. my sister, who is a nurse, thinks i should be tested for lupus. i dont have a rash though. does anyone have lupus and never developed the rash, just the other symptoms? i am going to all my drs wed. (i took off from work to see my urologist and my pcp) so i am def going to bring this all up to him. i am just wondering how others experiences were. and is there a fool proof test for lupus or is it like IC where everything else is ruled out first? thanks!

[Dreamlove15]

I'm not a doctor by any means, but I know about Lupus from a personal standpoint, because Two family members, my mother and brother both have Lupus. And I may have it as well.

So I will share what I do know.

my mom has the malar rash, hypertension, heart problems, past kidney problems, chronic fatigue, degenerative disc disease, low grade fevers, bladder issues(most likely mild IC, too stubborn to go to another uro), fibro, stomach issues and alot more...positive ANA, 1:160.

I myself have a positive ANA, it's been positive since I was 13, Ive also had fibro since then. Back then my ANA was 1:160. Anything below 1:80 is considered negative. Now My ANA is 1:320, which quite a bit higher even than my moms. Yet i havent been diagnosed. I think its my age honestly...and its a process...ugh. I also just had a new test run and will get the results back soon. I have alot of symptoms such as low grade fevers, nausea, hair loss, mouth sores, hypertension, stomach issues, rashes(not on my face), sensitivity to cold, joint pains & stiffness, fatigue, and of course the auto immune problems such as IC...& IBS & fibro. I have a feeling thats how i developed my ic...my immune system compensated for so long and then it just screwed my body up...Lupus wrecks havoc on your internal organs..

Now im saying everyone with IC has Lupus. this my symptoms im describing and my body. because you can just have IC...but alotta auto immune disease come along with IC too. just depends on the person...

There is NO definitive test to say YES you have Lupus, there are only ruling outs, along with blood work and symptoms that help diagnose the disease.

Some of the blood work you may want to mention to your dr are:

ANA- anti-nuclear antibodies
sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause
serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin
routine blood counts which may reveal anemia and low platelet and white cell counts
routine chemistry panels which may reveal
kidney involvement by increases in serum blood urea nitrogen and creatinine
abnormalities of liver function tests
increased muscle enzymes (such as CPK) if muscle involvement is present.

Do keep in mind that if you come back with a positive ANA, that is doesnt necessarily mean you have Lupus. It all depends on getting the other blood work done and what it shows, along with your symptoms. If you do come back with a positive one, your dr. will prolly run more blood panels, etc.

Understanding the positive ANA test:


What does a positive ANA mean? Unlike a pregnancy test, which if positive generally means only one thing, a positive ANA can mean many things. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease.


Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA. In fact, about 5% of the general population will have a positive ANA. Thus, at least 95% of the people who have a positive ANA do not have lupus! A positive ANA test can sometimes run in families, even if family members have no evidence of lupus.


The ANA is only a test and, like a high cholesterol value, a positive ANA doesn't necessarily equate having a disease. A positive ANA is only an indicator which points in several possible directions, and indicates that further investigation and analysis may be needed.


There is also a criteria that alot of Physicians like to use, which im not particularly fond of...only because my mom was told a GAZILLION times she didnt fit the criteria in the years of trying to get a diagnosis.

but here is the 11 criteria that dr's use. To have a diagnosis dr.s say you must present 4 of the 11.


*Criterion*

Definition

Malar Rash
Rash over the cheeks

Discoid Rash
Red raised patches

Photosensitivity
Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers
Ulcers in the nose or mouth, usually painless

Arthritis
Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis
Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder
Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic
Disorder
Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic
Disorder
Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear
Antibody
Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic
Disorder
Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).


Hope this helps. Message me if ya have any more questions. I hope ya get some answers...and I really hope you dont have Lupus.

Take care.

:pray:

[Tinkerbell23]

Thanks for all the info. i read in this book i have that sometimes you can have a rash on other parts of your face and it tends to be confused w/ acne. i developed what i thought was acne and have been treating w/ a script acne med and it never improves or goes away. i might just see my pcp tomorrow and just call in sick to work because the stiffness in my legs is getting worse and worse and its hard for me to get up and walk. i have also been confused and "foggy" lately...i wonder if its connected. my mom is hoping it isnt lupus, but it runs on her side of the family. i was told by old urologist to expect all this...the endo, chronic fatigue, fibro, ibs and lupus. he said ic brings all this on and the younger you are the more likely it is to happen. i see a different uro now and she wont say that, all she'll say is it wont surprise her if it all happened. i expected it to happen over years of time. but 2 years after ic i had endo and now its a year after endo and other issues are starting... blah...thanks for your help. hope you are feeling well... i'll let you know what happens. hopefully i can see my dr tomorrow, otherwise i have an appt for wed. thanks again!

[Tinkerbell23]

i went to the dr today and he tested me for lupus, Rheumatoid arthritis, Scleroderma basically any autoimmune disease that affect the joints. he is also sending me for an MRI to rule out MS. I'll have my bloods back on monday and after my insurance approves the MRI i can have that done. so i'll have to wait and see...but my legs HURT so bad!!! and my dr doesnt want me taking anything until my blood work comes back...this is gonna be a LONG week.

[jen74]

I have alot of the symptoms you have. I have severe muscle pains, especially after any type of excerise. I have a positive ANA, but it is low 1:80. I also have a elevated sed rate and C-reactive protein alot of times too. My blood work was mostly ok otherwise. There is NO test that is exact for Dx these type diseases unfortunately. They usually have to go by symptoms and ruling out other things. The last thing my rheumatologist said was that they do not like to put a stamp on you saying you have lupus or one of these diseases unless they are 100% sure. It just complicates things with the insurance companies. Oh, just so you know, I would see a rheumatologist for this, not a URO, they will not know anything about this. Rheumatologists are the specialists in this area.
Jen

[Tinkerbell23]

thanks for the reply. i read that a low ANA doesnt mean you dont have lupus, and a high one doesnt necessarily mean you do. its so confusing. i am currently seeing my primary care physician for this, just for the bloodwork and if anything comes back he will refer me to a specialist. my dad just told me that he was diagnosed w/ Rheumatoid arthritis when he was my age. and the symptoms are very similar to lupus. i didnt know that because he hasnt had problems w/ it since i was 8 yrs old (knock on wood), so i didnt remember. so i am wondering if its that. i dont know. my dr seemed most concerned w/ MS because the reflex test drs always do my one leg didnt have a reflex. but my sister said not to be too worried about it. i am hoping the blood comes back normal and the MRI and that this is some fluke thing, i doubt it, its never been that way w/ me, but i can hope. thanks for your repsonse.

[NewLife]

I read that only 40% of lupus patients have rashes.

[Dreamlove15]

Hey Tinkerbell,

You are definitely right. Just because you have a positive ANA doesnt mean you do have Lupus. A positive ANA could mean that you have other autoimmune diseases or it could mean that you part of the percent walking around with a positive one and is ok. But its good to look into these things.

The reason I know all this is because a few weeks ago I had a dr try to tell me that I could be the percent that is walking around with a positive ANA and am fine...HA...I looked at him and said, "If you told my mom that 20 years ago, she would be dead, and i wouldnt be standing here." he kinda stepped back, but ive been through enough to know IM NOT FINE!

he did say whose to say I wont develop a full blown case of Lupus in a few years...whatever that means...

I have IC, but I also have other things going on and im not gonna stop until I find out the answer.

But lets say your having a combination of symptoms, you have a strong family history of it...your ANA has been positive for many years, im just describing my case. I keep getting told that I dont fit the so called "criteria" but the thing is...you cant put people all in a little box, not every Lupus patient has the SAME symptoms. some have this and some have that...ya know what I mean.

Now there are some people who have Negative ANA's and have Lupus, but there aren't that many, most ppl with Lupus have positive ANA's. Not everyone has the same symptoms though, they just had a variety of the criteria i mentioned before...and not all people have that Malar rash or "butterly rash"...my mom has that though, I dont have a really visible one, but i do have a redness across my cheeks if im not wearing makeup...

I have been told that your ANA can be positive for several reasons other than Lupus, Like perhaps you were sick at the time of the blood draw..your immune system was down blah blah...but the thing is. I have have a positive one since I was 13...and its gotten higher over the years.

Im not gonna lie, Lupus is hard to diagnose and I think dr's are reluctant to diagnose people at such a young age...

I know this because my mom...

It took my mom almost 5 years to get an accurate diagnosis. She was 19 when her kidneys started failing...and then year after year she got worse and worse. her kidney problems stopped...but other health problems started to develop, by the time she was officially diagnosed she could barely walk...and was so sick...thank God she found a wonderful dr who is VERY well known in the Lupus field...hes was an ammmazing dr. Too bad we dont live in California or I'd be knocking on his door...

Lupus is not a fun disease by any means, and I wouldnt wish it upon anyone, Ive watched my mother suffer my whole life...it makes me sad to think about how naive i was about how sick she really was...because I truly know...what it feels like...

im just waiting for that day when i get my answer, in my heart, i know what i have...its not just a coincidence.

So for you, i think its good that you are looking into this. I would recommend getting a rheumatologist to work on your case. Have you checked into fibro?
I know that that causes alotta of muscles aches as I have that as well. I also am glad that you are getting an MRI, maybe it will give you some answers. And I pray that it isnt Lupus or anything else.

Ill be thinking of ya.

take care girl.

:angel:

[Tinkerbell23]

Thanks so much for the info. My dr called w/ my results and everything came back negative. the only thing was one test showed that my bones are losing calcium so he sent out for more testing. he thinks it might be early osteoporosis from the lupron injections. he still wont rule out MS until i have the MRI which is on the 15th. and he also said i could have fibromyalgia as well, which would explain the fevers and chills and body aches.

[alianne]

I have had health problems forever - I was born 2 months premature and alway was the sick kid with ashma, alergies etc. hen I got endometriosis and had a hysterectomy 5 years ago (at 25) after that since I still had pain (and they did have to do it because my uterous was disitegrating) they found IC. Then this year I was diagnosed with Lupus after having 4 years of sevee chest pain swelling around the lungs and ribs, I've always had rashes, my hands and feet turned numb and blue, fevers, nausea, fatigue, idney swelling, so when my ANA was high that was the final straw (and yes that is NOt always a diagnosis on it's own but since I had several inflamation things that responded only to prednisone and torodol it made a lot of sence). Now I am on methotrexate which is a chemotherepy drug, and doing a lot with diet, and vitamins too ... I would love to know anyone else who has these two things together.

[alianne]

You are so right - Lupus is had to diagnose - if fact when I got the possitive ANA test I was in the hospital for 2 weeks throwing up, unabl to lay down frm the chest swelling, but the drs tere said that it was too soon to diagnose it. I then went to see my naturopath who said that she was 99% sure it was lupus and that she would say as she had said 2 years before that is was a "lupus like syndrom" and treat it as lupus. She then sent me to a rhumatologist who agreed that it should be treated as lupus and since the treatments seem to help he put it in that catergory. These things (IC, endo, lupus) seem to really run together. Hope you can get an answer soon, but in the meanwhile do look into natural things - the Anti Inflamation Diet is a great book and some parts of it (not eating toamtoes or potatoes) has REALLY helped me with the numbness and arthritis pain. if i so much as eat a slice of tomato I am achy and flu like for a couple days. hope this helps!

[Tinkerbell23]

My first urologist said ic, endo and fibro always run together. my fiance's aunt has ic and lupus. i think ic is just a terrible autoimmune disease that drags other things down w/ it. my drs said once you have one autoimmune issues to expect more.

[Dreamlove15]

Yep Tink, you are right about auto-immune diseases being connected. Although not everyone has all the other ones that coinside with IC, alot of them do:/ It's not fun at all...

I honestly think that the reason I got IC is because my immune system was down...since my ANA has been positive since I was 13. I know I may not be diagnosed with Lupus just yet, I have no doubt the diagnosis is coming in the near future...only because 2 people in my immediate family have it...and I have soooooo many signs:/ Not to mention an ANA that keeps gettin higher...
For now im just waiting...

I Hope you can get some relief from all this!!!

Hi Alianne,

Im sorry you have Lupus:/ I know it must be tough having both IC and that...I also think I have it as well. My mom keeps thinking that if a rheumy would see me that immuno-supressants may help me, since my IC isnt responding to any of the treatments. I definitely have more than IC going on. I have alot of the symptoms you described, the nausea, fatigue, high ANA, being REALLY sensitive to cold(feet turning blue), rashes, muscle weakness in my legs & arms, potassium issues, hair loss.... Im just having a hard time gettin diagnosed...since I dont have health insurance and dr's seem to think 23 year olds dont get sick:/

I hope you start feeling better soon!

[alianne]

is potassium being low something to do with lupus?