Could it be Lupus?

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Girlie
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Date Joined May 2014
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   Posted 6/18/2014 1:05 PM (GMT -7)   
I have been unwell for almost a year now. I have just been tested for Lyme disease and waiting for results.

Is there any way to distinguish between the two based on symptoms?

I have had blood tests done and no antibodies showed up for Lupus.
How reliable is it?

My main symptoms are: Muscle pain that migrates, joint pain, vibrations in my body - does anyone with Lupus get nervous system vibrations? cold flushes/chills, trouble sleeping,

thanks

Talldoode
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 6/18/2014 6:14 PM (GMT -7)   
Very hard to say Girlie. You dont say if you are on any meds, nor do you mention who did the antibody test. I have found that my PCP orders all the wrong tests and that I have to go to my Rheumy for testing if I want to really see what is going on. The antibody tests are only one of a barrage of tests - but even with all the blood tests they can do, Lupus is still hard to actually diagnose. The only thing I get that you mention is the joint pain. My muscles can feel weak, but I dont get pain in them. And usually with Lupus you get fevers and hot flash type feelings rather than cold. But hard to say.

Wish I was more help...

Best

Girlie
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Date Joined May 2014
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   Posted 6/18/2014 8:16 PM (GMT -7)   
Thanks - not on any meds.

My PCP did the antibodies test. One was ANA and another one was something like Anti-Ro (can't remember). She said that 90% of people with Lupus test positive for the ANA. All my blood work comes back good. I don't have inflammation in my body, and my Hematology blood work is all good, too.

I don't have fevers.

I have nerve pain and shooting pains all over the place, along with vibrations in my body.

Lynnwood
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Date Joined May 2005
Total Posts : 7556
   Posted 6/18/2014 8:55 PM (GMT -7)   
One of the best ways to learn about Lupus is to read on the website www.lupus.org. There you will see the 11 main symptoms that generally indicate Lupus.

One of the main things to know is that GP's/PCP's generally run an ANA test before deciding if something is indicative of Lupus or not. Then, and only then, they will refer to a rheumotologist - the rheumotologist is the Dr fully trained and experienced with Lupus and many other auto-immune diseases. The "hidden trap" in this is that ANA is NOT a firm indicator of yes/no for Lupus. If you believe you have 4 or more of the listed symptoms, you will want to see a rheumotologist regardless of what the GP/PCP is advising (and regardless of the ANA results).

A good way to find a rheumy who is "good at" Lupus is to visit the Lupus website above, find your local chapter, then ask what Drs are active on their advisory board -- these are the Drs most interesting in helping Lupus (and other auto-immune) patients.

Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

horsegirl93
Regular Member


Date Joined Jun 2014
Total Posts : 22
   Posted 6/19/2014 12:52 PM (GMT -7)   
girlie iam in the exact same boat as you! (see my post) its very confusing because I have a positive ANA but a negative ENA (I believe that's the one??) ...my c3 & c4 (which my rheum said is a lupus indicator) are totally normal. the only thing out of whack is my DS-Anti DNA its at 728...negative is 200. I did get bit by a tick last year but never thought anything of it because I didn't have the classic rash. my elisa test was negative but recently just had the western blot and there are some positive reactions in it. its very hard because right off the bat the rheumy said lupus and im on plaquenil and prednisone. hoping you get an answer soon
Too young to be dealing with such cr@p.......currently on 400MG of Plaquenil & have tried 5 times and counting to get off Prednisone. started at 50MG and am down to 5MG........wish me luck!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27946
   Posted 6/19/2014 5:09 PM (GMT -7)   
horsegirl - I have come to this forum...just to check if my symptoms fit lupus...as I am not sure yet. I have had my blood work sent to Igenex to test for Lyme, and am waiting...but again, I really don't know...maybe it is Lupus.

horsegirl93
Regular Member


Date Joined Jun 2014
Total Posts : 22
   Posted 6/20/2014 6:12 AM (GMT -7)   
i know how you feel...all my symptoms can be either or ........lymes or lupus :(
Too young to be dealing with such cr@p.......currently on 400MG of Plaquenil & have tried 5 times and counting to get off Prednisone. started at 50MG and am down to 5MG........wish me luck!

live4my5babies
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/20/2014 8:42 AM (GMT -7)   
Hello I am new here. I was told by my pcp back in 2008 that I have Lupus. She has since retired and every doctor I had since has tested my blood and told me I do not have it. However, I have unexplained high blood pressure, bad headaches, dizziness, joint pain (shoulders, feet, hands, knees, toes, and hips), I have been so tired that I cant keep a job at times. I was treated for Kidney stones 4 years ago and had 2 surgeries for it. I get very sick in the sun and heat. I have eczema, but it is not in the usual spots like creases of the skin. How do I confirm if this is truly Lupus. I am 35 and have 5 children and I have been told that this is why I have all these health issues. I have been giving meds for all and then taken off. I currently take nothing but I feel I should because I dont want to die.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27946
   Posted 6/20/2014 9:55 AM (GMT -7)   
Live4my5babies - Sorry you are feeling so terrible! I am not diagnosed with anything yet. My doc tested me for autoimmune, and nothing showed up.
From what i've read, you can still have an automimmune disease with good blood work...however, I did read that 90% of the people with Lupus will have a positive ANA.

I have just had my blood work sent to Igenex labs to see if i have Lyme disease. Because I have sooo many symptoms...it could be Lyme.
My next step will be to see a Rheumatologist I guess and see if he/she thinks I have an autoimmune disease.

So, you didn't respond to the lupus meds?

Good luck with your journey...and hope you feel better soon.

Talldoode
New Member


Date Joined Jun 2014
Total Posts : 16
   Posted 6/20/2014 9:24 PM (GMT -7)   
The thing is... Lupus is a "bucket" diagnosis. It isnt like "Ya, you have colon cancer because we can see the cancer in your colon" (sorry if that is a terrible analogy but my dad passed from colon cancer a year ago and it was pretty obvious he had colon cancer). It isnt like an allergy to grass where an allergist can do a test, watch your skin swell up and say "wow.. ya, you have an allergy to grass". Your ANA can be normal and yet you can be miserable.. and still have the other "check boxes" that point at Lupus - or not. My ANA goes positive to negative all the time and I feel the exact same.... crappy... ha ha. My blood tests can be 100% normal ... and I still have lupus and feel crappy. A few rheumys doubted this was lupus (I was a very, very white 44 year old male with viking ancestry and no family history of autoimmune... so not exactly fitting the profile... but here I am) but then it moved into my kidneys and it was "ya, you have lupus nephritis... oops".

All in all - when the PCP's cant figure it out, and your symptoms are all over the map, find a rheumatologist. It is mostly likely autoimmune of some type. They are all *mostly* treated the same. You get a crapload of Prednisone and you feel better for a week :-). The thing with Rheumy's is that you have to find one who specializes in Lupus or other autoimmune. Many of them (especially older ones) are only good at Rheumatoid Arthritis. They are not really autoimmune Rheumys. I found that out the hard way.

What is the bottom line? You feel crappy and the PCP cant find anything wrong with you right? Find a specialist. Keep in mind Lupus, Fibromyalgia, and a host of other "women's diseases" were - until recently - treated with anti-depressants and Valium :-). It was all in your head! Get out of bed and fix dinner! That has changed, but they are still very, very hard to diagnose.

And to live4mybabies - kidney stones have nothing to do with autoimmune (you probably already know that). The sun sensitivity is almost a giveaway here. No other disease (that I have read about) causes you to feel sick or tired from the sun. My recommendation - have your PCP check your urine for protein (easy dip stick test). The fatigue is pretty much part of every autoimmune out there but can be a million other things too... lack of sleep, allergies, diet etc.. The joint pain can be any number of things too. The high blood pressure also isnt lupus but could be a kidney issue. All in all you need to get to a rheumy just for piece of mind. My kids are a real "pain"... but they dont cause pain! <grin>.

Oh - and you are not going to die :-). You may feel like you want to (I am pretty sure everyone on this forum feels like they are pretty much done at one time or another) but there are treatments that help you live a normal lifespan. You may not feel like you used to, but you will live long enough to see your kids graduate college and make grandkids. It isnt all bad. Trust us.

Cheers.

Keep us all posted on what you find out please.
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