Lupus
Moms View Message Board: General Discussion: Archive March 2004:
Lupus
I'm being tested for this right now. I have a lot of the symptoms. I'm very scared. Luckily, my childbearing days are behind me- at least from what I hear. Any experience?
No experience but many hugs and prayers coming your way!
{{{Laura}}}
No experience, but that's one of the things I've been repeatedly tested for over the last 4 or 5 years. That and rheumatoid arthritis. I have an IGF-1 (human growth hormone) deficiency which is essential for cell repair. Without that you have a lot of body pains. Have you seen an endocrinologist?
My mom has RA and she's been told it's very similar to Lupus. I don't have any experience with it, though. Good luck with all the tests. {{{{{Laura}}}}}
((((hugs)))))
No personal experience, but one of our neighbors had it for years and years. She lived a very "normal" life and lived to be in her 80's.
My biological mother has rheumatoid arthritis.
When I moved into this house in 1992, I chatted with my new neighbor (it's a twin house) and she told me she had lupus. At that time she was on steroids and had the puffy face and other symptoms. But, great strides have been made in the treatment of lupus. For the last 6 years she has looked just fine, acted just fine, and says she feels great. No symptoms and no signs of problems from medications.
I agree with Karen, if you are not presently seeing an endocrinologist (board certified, please), ask your primary care doc to give you a referral, and check with your insurance company to see the endocrinologists on their lists. Pick one at the largest hospital (preferably a teaching hospital) you can reasonably reach.
Laura,
I went through the same thing a few years ago. (your exact age!) I was never officially diagnosed with Lupus (blood work did not confirm it), but even the rheumatologist admitted he didn't know what else it could be. (Based on my combination of symptoms.) I was miserable for quite a while, but I've been almost symptom free for over a year. Part of it was just learning to better manage stress, and not allow myself to get too tired. I sure understand your fear! I was scared to death. Lupus is a strange bird... it affects different people differently, and you can have flares and remissions over and over. I've done lots of research, so feel free to e-mail me to chat about it! I understand!
I was also tested about a year ago for Lupus. I have all the signs and it stumped the doctor when the blood work came back that I didn't have it. The only thing that showed up was that I had a real active case of Mono, which I didn't know but is related to Lupus. It causes flare ups every now and then. My best friend has Lupus and keeps it under control with medications and plenty of exercise. I wish you luck and hope you feel better.
Laura, I don't know what symptoms you are having, but I was tested for lupus and rheumatoid arthritis over 11 years ago and then 3 years ago. Both times were negative. 11 years ago I slowly started having bilateral joint pain in my elbows, wrists, knees, and ankles. It progresses from uncomfortable to exruciating and I had to get up 30 minutes early to get dressed for work because I moved so slow and it hurt so bad to get dressed, sit on the toilet, anything that involved bending those joints. Nothing showed up on my tests, I was put on some high doses of Naprosyn for a few weeks and the pain went away never to return. A few years ago I was dx'd with subglottic stenosis which can be the result of various auto-immune diseases. My ENT sent me to a rheumatologist for a full work-up. He took 4 huge tubes of blood and tested me for everything!! Again, free and clear. It's tough not knowing, but sometimes quite a relief not to have a dx. Hang in there and please keep us posted. If it is lupus, there are so many improved medications out there that quality of life is significantly improved. ((Laura))---the waiting is the hard part.
Still waiting..... 
Got a message on Fri. I have to call mon to "discuss the results." That can't be good....
Laura, don't jump to the worst conclusion yet. I received that same phone call when my test results for lupus were in. I went in expecting the worst diagnosis but my doctor was concerned about my anemia, which she discovered through the extensive blood tests she had run. It might be something else much less serious and something you can work with. And even it it is lupus, there are many ways to treat it and live with it.
I hope you get *good* results.
{{{{{{{{hugs}}}}}}}}}
Thanks for keeping us posted. I just thought about you yesterday, wondering if you had found out anything. Karen's right...even if it is lupus, there's lots you can do. I'll be thinking about you and praying for you . {{{hugs}}}
When I worked for a Doctor we where not a loud to leave messages and not allow to give results to just anyone... We had to speak directly to the parent of the child. PED's office by the way.. It is against the law to leave a message on an answering machine in regards to test results unless told to do so by the patient and it is noted in the chart. It is also against the law to give results to spouses with out the charted consent of the patient. Anyone over the age of 18 has to give consent for information to be shared with any one other than themselves which means NO messages on an answering machine in regards to test results. It is the whole new patient confidentiality law rules. So trust me it could very well be nothing at all. So don't stress to much... Prayers for you...
I signed a paper last week saying they can leave a message on my answering machine or with my husband..... I'm calling in 30 min....
Positive strep test.
Positive Lyme test.
ANA is fine (aka no Lupus)
Have to see a rheumologist
Trying to get an appt asap, but the office isn't open yet that they referred me to....
Hi. saw this last night...had to wait till I got confirmation of my registration before I could answer! lol
I have Lupus, Fibro, Raynauds, Sjogrens, Osteoarthritis, etc, etc, etc...
I am officially diagnosed w/Lupus for a few years now, but the DX was a LONG time in coming...years in fact, as is the case for most being tested. Its very frustrating!
I am one of the small percentage that is ANA NEG Lupus-I test neg for the ANA...which is NOT a reliable test for Lupus. There is no one single test for this disease and the ANA is a controversial one at that. Those like me who are ANA neg lupus usually also have anticardiolipin antibiodies that we test postive for...as do I. Its a blood clotting disorder also known as antiphospolipid anibiodies(APS)...for some as of yet unknown reason, we usually test ANA neg when we are APS pos. but have met many of the other 'criteria' and symptoms of Lupus.
I have done EXTENSIVE research on Lupus,Fibro, etc...matter of fact, I own, built and run a support site, but I don't want to post it here as per the guidelines. Please feel free to e-mail me though for any questions you may have. I can even send you info booklets and pamphlets on Lupus, Fibro, etc..(I have a TON as I am starting a local support group soon! lol)
It is important that you find a GOOD rheumy(rheumatologist in 'Lupie jargon' lol)
You may have Fibromyalgia, which as I stated, I also have as one of my secondary diseases to Lupus-Lupus being my primary disease. Or it could all be related to the Lyme-I was tested numerous times for that on the road to diagnosis! lol
What are the symptoms you are experiencing? Lyme and Fibro symptoms can be very much like those of Lupus. Fibro would certainly be the 'lesser of two evils' as I like to say! lol Lyme as well! Though all require good education, GOOD doctor communication and GREAT support! 
Please, ask away! I have LOADS of info in my head, at my site and at my disposal to share! lol
Best to you!!
*hugs*
Cathy
Laura, good luck to you! Sounds like the Cathy's post above will be very helpful to you. I'm sure you are swimming with questions. Prayers for your health.
Cathy, I just have a curious question. Every person I know who has lupus (that is only 3), was first diagnosed w/ Lyme or diagnosed along w/ Lyme. Does Lyme cause Lupus? Isn't Lyme the disease you get from a deer tick bite....and generally more found up north than the south? I don't want to take away from Laura's post and her concerns. I was just wondering these questions when I read her post. Perhaps a new thread would keep this thread running true to Laura's original post.
Dana and Laura, butting in here also - I belong to a couple of health related messageboards and many people with fibro, or fibro-like symptoms have positive lyme results. There IS a connection, though I'm not real clear on a lot of this................
YIKES. Not only am I freaking out about that- I'm also freaked about the strep. My 6 yr old also has had a rash. I brought him to the dr two weeks ago- they said it was nothing, but I'm thinking he might have strep as well. He does have Tourette's and we are bringing him to the neurologist for OCD symptoms on Wed. There is a link between strep and TS/OCD. AHHHH. Now there's a link between Lyme and Lupus???? When will this end??? I'm freaked about the rest of my family too. Should they be tested for strep? I have an appointment for tomorrow PM with the rhuemotolgist (spelling??) my dr recommended.
My symptoms:
fatigue (really bad)
Memory trouble
Rash across my face- now creeping down my neck- a little itchy on my neck
Nose "ouchies"
dizziness/ feeling faint
Pain in my muscles over my liver and spleen (have had that on and off since I had mono at age 18- three mo after mono I was diagnosed with a "post-mono muscular virus
hair falling out
red dots all over my shoulders/arms that are turning into weird "freckles"
I can't remember any more right now, but I have a list at home that I'm bringing to the dr(see "memory trouble" above!)
I have no idea which of these are important to mention, so I'm just going to mention them all!
Oh- also trouble swallowing (I aspirated a piece of food last Spring and really have to "concentrate" when eating)
And I ripped a muscle in my neck (very painful) a few years ago. It still bothers me.
OK...first I'll respond to the Lyme/Lupus link. There is none. Lupus is NOT 'caused' by anything else-except in the case of Drug Induced Lupus, where the symptoms of that ends when the culprit medication ends.
People think there is a link due to the similar symptoms. Lyme causes much the same discomfort as does Lupus in the body. While the two are NOT connected, a person can have Lupus along with having Lyme disease. Many who have Lupus/Fibro etc...can have other disorders/syndromes as well-as in my case.
~~~
Laura,
I'll try my best and answer all your concerns here.
Symptom wise:
fatigue (really bad) -VERY common in Lupus as well as Fibro AND with Lyme
Memory trouble - VERY common with Lupus-I have it bIG TIME! lol We call it 'Lupus Brain Fog!' lol
Officially, its known as cognitive dysfunction and can affect in many ways, as it does me. I have trouble getting words out, remembering words, remembering what simply everyday things are called and even spell/type mixed up! Its frustrating to say the least and requires lots of spell checks! lol
Rash across my face- now creeping down my neck- a little itchy on my neck -The known rash associated with Lupus is the 'butterfly rash'-called such for the butterfly shape it takes across the cheeks and bridge of the nose. There are other rashes associated w/Lupus as well. It is also known as the 'malar rash.'
Nose "ouchies" -Do you mean sores inside your nose? Cause they along with mouth sores/ulcers are also common to Lupus. I get the ones in my nose only from time to time.
dizziness/ feeling faint -I suffer dizziness/light-headedness a LOT!
Pain in my muscles over my liver and spleen (have had that on and off since I had mono at age 18- three mo after mono I was diagnosed with a "post-mono muscular virus -Muscular pain from Lupus is a widly known complaint, same with Fibro and becomes an effect of Lyme.
hair falling out-common with Lupus especially during a 'flare' My hair falls out like crazy!!! And its LONG! Its everywhere in the house! lol This type of hairloss, while annoying and even upsetting, is NOT permanant and the hair continues to grow in.
red dots all over my shoulders/arms that are turning into weird "freckles"-don't recall this being a feature of Lupus, but what its called is 'Petachie'-tiny vessels that burst upon friction-rubbing against something for ex. This can be common in MANY people as a whole, not just limited to a disorder/disease.
Photosensitivity also causes rashes on the body in those with Lupus and other disorders.
Oh- also trouble swallowing -this can be a complaint of those with Lupus, it has to do with weakened muscles in the throat/esophogus.
Neck pain is VERY common in Fibro-one of the chief complaints. I have LOTS of neck soreness/achiness all the time. As does my 14 yr old son who has also been DX'd w/Fibro.
Now, since many of these symptoms are seen in all three, Lupus, Fibro, Lyme, it can be very hard to discern what is from what! lol It is for that reason that you need a GOOD rheumy who knows his/her stuff! believe me, there are many out there that don't! lol I lucked out, finally and my rheumy I have now is a God-send! She is an expert in the field of Lupus as well.
As far as the 'criteria' they use to help determine Lupus or not...here is a the list they-Lupus Foundation- use(outdated to boot! They really need to revise this list and many docs agree that it doesn't cover all the bases well enough!-It has been revised to now include the Antiphospolipids as it is quite common now.)
4 or more of these 11 symptoms will help determine diagnosis. Recently, a new Lupus diagnosis criteria was adopted requiring 3 of 10 symptoms similar to the ones below, and appropriate screening of Anti-Nuclear Antibodies (ANA) blood test to make final diagnosis.
Criteria &
Definitions
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).
~~~~~~~~~
Unfortunatly, I meet 6 of these at this time(along with MANY of the 'Lupus symptoms' not on the 'criteria' list and am hoping and praying that there is not now reneal involvement(kidneys affected) as I have been having probs in that area for awhile now.
~~
As you can tell, the field of rheumatology and rheumatologic disorders is VAST and confusing! Hense the need for a good doc.
I'd also like to mention, since I saw you mentioned Tourette's Syndrome, that my son, who just turned 18 was DX'd at age 5 with Tourette's and ADHD. He is now a senior in highschool, a volunteer firefighter and recently passed his exam and is now also an EMT!!! -proud mom! lol
Josh was one of the approx. 27% that outgrow the Tourettes in adolesence. He still has some minor tics and has always had some OCD tendancies, but he has overcome so very much! His schools/teachers have always been great! He was 'classified' in Kindergarten as NI and really has had no problems through the years. So, there is hope! And LOTS of it! There are many people with Tourettes that lead full and normal lives...even becoming doctors/lawyers/teachers/firefighters/EMT's, etc! lol
I do have to say, that I don't recall Josh ever having Strep many times as a child.
I hope I have been of some help to you...and please, if ya have more questions...ask away! lol
*hugs*
Cathy
Wow, Cathy! SOunds like we have a lot in common! Thank you so much for the info. I'll let you know what happens. BTW- What is "NI?" I've never heard of that.
Hey Laura, no problem. Glad to help where I can and God knows I know a LOT on these subjects as I live them every day of my life! lol
yes, it does seem we have many things in common and yes, please do let me know how it all goes!!
'NI' in 'school special services' stands for Neurologically Impaired...which by my son's grades and really never having any major learning probs, only proved them wrong about their 'classification!' lol
I don't fully agree with the 'classifying' of children..not as far as the labels that are put on them and many in the school systems-teachers and the special service peeps agree as well. Once you get a classification on a child its hard to get it taken away. And once you DO get it taken away, then the child no longer is elligible for the services! Messed up system. lol That's why Josh's case workers always left his classification alone, even though we all would have liked to see it gone, (due to how well Josh always did and hardly required the help of the in-class support teachers!!! lol) but, then he would have to go through the entire process of screening and testing again to get any services should he have needed them again. So they just left him classified in case he did and pretty much kept mainstreaming him into other 'regular classes' as they saw the need was no longer there for certain classes. Now, and for years now, Josh is fully mainstreamed and has never been 'left behind' always doing what others in his classes were doing at the time. And usually with great grades! lol
He's overcome a LOT (had to have major surgery at Columbia Presbyterian Hosp in NYC at age 1 due to a docs very badly botched circumcision!!!) and we are so proud of him for all he has accomplished! The test to become an EMT alone is no easy task! Now he is also attending the fire acadamy and will soon be a full firefighter! Right now he's a 'probie' they call em. lol He had been a 'junior' firefighter from age 15 1/2 till the day he turned 18 at the end of January...so now he's a probie and going to the acadamy. He also has military plans for his future. *gulp* (But still with utter pride and love!) lol
Boy, I can sure ramble on when I get going! lol
Take care!
*hugs*
Cathy
That sounds like what is now called OHI (Other Health Impaired), which is what my son would be labeled should he qualify for SPED. Right now he's not even close, but does have a 504 accomodation plan.
It's looking like I have Fibromalagia (don't know if I spelled that right) though he's not ruling out other things at this point. There was a mix up with the paperwork- dr is looking it over today. I go back in a few weeks. He doesn't think I have "active" Lyme or "active" strep, but will call if there are issues after he looks at the paperwork. UGH! I still feell awful....
I'm so sorry you are going through this, Laura. ((HUGSS))
Hello, I was diagnosed with Lupus over 14 years ago. I have found that the best solution for me was to remove the toxins from my life and build my immune system to the strongest through natural means. After trying numerous kinds, I finally found 1 type that works outstanding and even ha allowed me to become prescription free. You can meet me, and hear my solution at http://www.extremehealthmakeovers.com/my-lupus-solution.html.
Hope this helps. Since I have had such outstanding results with it, we have shared it with others who in turn have seen great results too not just from lupus but from thousands of other ailments.
Feel free to contact me if you have questions. I'd love to help.
God Bless You.
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