"you have lupus but you DONT have LUPUS"

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SFnative82
Regular Member


Date Joined Mar 2008
Total Posts : 39
   Posted 5/7/2008 4:45 PM (GMT -7)   
I have every possible symptom. Chronic fatigue, exhaustion, fevers, joint pain, breathing problems, chest pains, swollen hands and feet, anemia, severe flares, knots in my feet and hands, burning hives...I cant get out of bed somedays...
 
Every doctor I have talked to has said the same thing...looks like lupus.
 
I have been tested for everything from hep to malaria. Im negative.
 
Now...I have had 2, 24 hour urine tests...Had 9 viles of blood drawn 4 times in the last 2 months. Everything comes back healthy...rhuematoid factor was raised one first blood test, but only marginally. Now everything is perfect. ANA is normal, RF normal...everything normal.
 
What--The--?
 
They want me to take allergy tests now....I have cut everything out of my life that would cause allergies...I dont eat anything, Im not around anything...and no one thinks its allergies...they just want to "see".
 
Anyone ever have this problem?
 
Also I am still taking Plaquenil and I am still having 4 day long flares, severe flares, bad hives and rashes everywhere, once a week.
 
Isnt that why Im taking the plaquenil??
*jenn--#2*
 
 
Who the heck are "THEY" and why is everyone asking them these questions?
"THEY" sure do have a lot to say...


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/7/2008 7:59 PM (GMT -7)   
Jenn,
  I'm sorry your suffering with no answers. If you have been taking plaq for awhile could it be masking the labs. Is that the only medicine you take?
   I hope you get the right answers soon and some relief from the chronic flares. Take care and keep us updated. You will be in my thoughts and prayers.
                                                              Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 5/7/2008 9:04 PM (GMT -7)   
Hi Jenn,
 
I'm sorry you're going through this too.  I thought the same thing as Babs.  The Plaquenil might be making the labs look normal when they really aren't.  You can't be on any medication when getting these blood tests done.  I'm not too sure why you were given plaquenil if there isn't a diagnosis yet?  Hmmmm.  You can have lupus with negative test results, but it's not common for ALL of them to be negative.  You're in a conundrum for sure.  I wish we had more answers for you.
 
For most of us, the diagnosis process takes many years.  Mine took a decade.  All I can suggest is keep seeing your doctors, document every symptom you get, take pictures of any rashes.  Just keep a really good diary of what your day to day life is like.  Eventually the answers will come.
 
Keep us posted,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 5/7/2008 9:10 PM (GMT -7)   
You can have the symptoms of Lupus for quite some time before the lab tests reflect it. For over a year, mine have been marginal.. on the lower end of positive. As miserable as I am, the doc says I am showing mild signs. MILD! I can't imagine it being worse but as with other diseases, there is always someone that is worse off.

Also, some docs treat you for lupus and then see how you respond. If you improve, then they can say it is probably Lupus. It's so frustrating. Remember, there is no definitive test for Lupus either. I truly believe that it just takes time for your doc to know what is normal for you, and then anything outside of normal is treated appropriately.

I do hope you get some answers soon.

Ti

Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 5/9/2008 12:19 AM (GMT -7)   
Jen,
 I had the same problems as you. I dont know how many times I heard, "Well, it looks like you have Lupus......oh well....your ANA is negative.....we will have to (insert lame excuse here)." I think that if the Plaquenil is helping (although it doesnt sound like it is) I would just let them treat it however they would treat Lupus. I gave up on getting a diagnosis. I figure they really wouldnt be doing anything different if I was ANA positive anyhow.
 
As for the allergy testing that makes no sense. Why dont they do the testing in the office? They can do those pick prick things. Then they can say exactly what you are allergic to. It takes like an hour everytime, but it is impossible to take everything out of your life! Did they give you a plastic bubble to live in??
 
I am sorry you are having such a rough time, I hope you are able to get the answers you are looking for!
 
Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/9/2008 6:47 AM (GMT -7)   
Jen, if they want to test you for allergies, a start might be to give up gluten for a few weeks. I did two months ago and feel like a brand new person. It turns out that I have lupus and a gluten intolerance, both which cause similar symptoms. It didn't take more than a week for me to notice the difference. I wish I had tried it four years ago.

This may have nothing to do with you, but I know how you feel, and it's like the end of the world. I hope you get some relief.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/9/2008 7:09 AM (GMT -7)   
Jen . . . I had to have allergy testing too. I was/am ANA- and it was actually the derm who did the allergy testing that first dx'd me with Lupus. My problem was that none of my doctors steered me toward a rheumatologist. I had seen an internal med doc, derm, professor derm, ortho doc, spine doc, pain management and NONE of them told me I should be seeing a rheumy.

I hope your doctor has, at least, referred you to a rheumatologist. The rheumy undx'd me but treated me more aggressively. Now my new rheumy (Cleveland Clinic) also said its not lupus . . . but when I went in to see the new GI (Cleve Clinic) she looked at my chart and said "Lupus". I went in for c-scope and the nurse said . . . "oh, I see you have SLE" So I'm not sure how that got in my record . . . but I'll be asking the rheumy when I see him in a couple weeks.

I think they are just making sure they aren't missing anything. Most people with allergies don't even realize what is causing their problems. If your testing is negative, its just one step closer to proper treatment for your issues.

Keep us posted on your progress.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/12/2008 4:30 PM (GMT -7)   
((((( Jenn ))))) I am so sorry you are going through this. I remember how frustrating it was before I was dx, getting a doctor to listen to you is a real challenge. I remember leaving my 2nd rheumy's office in tears because he was more interested in my enlarged thyroid rather than my debilitating symptoms. When I questioned him about my symptoms he said "well, maybe by the time you are 90 years old your labs will catch up with your symptoms". WHAT?????? (argggg, still makes me mad).

Hang in there, they will figure it out, eventually or you could always seek a second opinion. Oh... I meant to ask you, how much Plaq are you taking and for how long? Do they have you on any other meds?
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


Kazzahale
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/4/2013 2:30 AM (GMT -7)   
Hi I am new to this forum. SFnative82 your post struck a chord with me. This is my website. Sounds like our stories may be similar. www.lupus-naturalhealing.com Please read it. Perhaps there is time to turn it around by the use of natural therapies before it gets so bad as to need strong chemicals?

The way forward for me, was to clear my body of heavy metals and chemicals that I was sensitive to. I dont live a life of worry about what I do. I am not obsessed with avoiding chemicals but also I know that now and again I have to detox in order not to get Lupus antibodies back. By the way, my dr has taken me off all the Lupus meds as it was obvious I was reacting badly to them and was better off without. This may not be the case for you but please do look at my site it may be of such use to you.

All the best.


SFnative82 said...
I have every possible symptom. Chronic fatigue, exhaustion, fevers, joint pain, breathing problems, chest pains, swollen hands and feet, anemia, severe flares, knots in my feet and hands, burning hives...I cant get out of bed somedays...


Every doctor I have talked to has said the same thing...looks like lupus.



I have been tested for everything from hep to malaria. Im negative.



Now...I have had 2, 24 hour urine tests...Had 9 viles of blood drawn 4 times in the last 2 months. Everything comes back healthy...rhuematoid factor was raised one first blood test, but only marginally. Now everything is perfect. ANA is normal, RF normal...everything normal.



What--The--?



They want me to take allergy tests now....I have cut everything out of my life that would cause allergies...I dont eat anything, Im not around anything...and no one thinks its allergies...they just want to "see".



Anyone ever have this problem?



Also I am still taking Plaquenil and I am still having 4 day long flares, severe flares, bad hives and rashes everywhere, once a week.



Isnt that why Im taking the plaquenil??
blush blush blush

Post Edited (Kazzahale) : 1/4/2013 2:50:10 AM (GMT-7)

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