Obviously Lupus... I think ?!!

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daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/11/2012 10:08 AM (GMT -6)   
Hello All ! After reading through so many posts here, I decided that this would be a great place for me to share and vent...
Here's my personal "low-down": I have had severe health problems for about five years now. I was sent to a gastroenterologist, a urologist, an allergist, and finally a rheumatologist, who attributed my long list (45 or so) of symptoms to fibromyalgia. Some of these symptoms I have had all of my life, but have quickly worsened over the past five years.
My current problem is that, although Lupus and RA and autoimmune diseases in general run in my family (females on my mother's side, nonetheless) my doctor refuses to claim that I have Lupus, simply because my ANA test was negative. He did not even get the LEVELS. My female cousin has Lupus, and informed me that she tested negative for ANA TWICE before finally testing positive...
Please don't misunderstand me - I don't WANT to have Lupus - I simply am not happy with his diagnosis of fibro; I truly believe in my soul that it is something else, and I wish he would work with me to find out exactly WHAT.
How are all of your blood test results? Mine caused ME some concern because on the one test I have results for, my WBC was LOW, my neutrophils were LOW, as well as some other "borderline" levels... My doctor was not going to say anything about this; I brought it up myself, after getting my own copy of the results. Luckily, I talked him into ordering some more tests for me. I should have those results within a week; I am hoping for a specific answer.
 
Anyone else test negative for ANA, and still get diagnosed with Lupus? I looked at the eleven symptoms listed on a Lupus website, and I have eight out of eleven. I also have some symptoms of Sjogren's...
 
So glad to be here! 
 
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/11/2012 10:25 AM (GMT -6)   
Since the recommended (by CDC & Lupus.Org) way of diagnosing lupus includes both systems and bloodwork, I would say that your Dr is one of those stuck at bloodwork only. I suggest a second opinion.

To find a rheumy that really knows about Lupus, check out www.lupus.org. Follow the links to find your local chapter, then look at the chapter page or call them to find out what rheumies are on their advisory board. Then choose your second opinion Dr from that list.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/11/2012 2:40 PM (GMT -6)   
Thanks, Lynn! I will do that. Like many people, it's a matter of insurance problems, as to who I can see etc... This doctor happens to be a friend of my primary physician. I did not care for this doctor much, from the beginning, but thought I could at least get bloodwork ordered, etc.
Whatever I have, it is absolutely detrimental to my life, in every way, and I am at my wits end. The guilt of being "sick" four days out of five is overwhelming. My husband and kids are so understanding...They put up with me! However, there are others close to me who truly think it is all "in my head," and this is probably why I am hoping for some concrete diagnosis. It is NOT in my head. I am NOT "sick" because I am depressed; I am depressed because I am SICK.
 
I've got the usual symptoms - here are a few off-the-wall ones. If anyone else has any of these, as well, please let me know :
 
Horizontally ridged nails (NOT vertical - which are common) ; I call them my "witch nails" (yes, I have Reynaud's)
 
Red, flat dots all over my nose and cheeks, and some developing on my hands - they look like acne scars, but I never had acne problems !
 
Sometimes, my urine smells like sulfur (this could be from a mostly veggie diet, though) and I have had high protein levels and hematuria several times the past three years
 
Severe allergies - just had my first full "prick test" , and found out that I am allergic to almost all GRASS, as well as several trees, dust and dogs. My sinuses are always getting clogged, even when I take allergy meds.
 
Whenever I get sick, in any way, it eventually makes its way to my insides; which feel as if they will explode. Diagnosed years ago with IBS and internal hemorrhoids (YAY)  lol .
 
I will have a day of SUPER HIGH ENERGY, where I feel as if I am twenty again (I am in my early forties). GREAT, huh? However, over the years, I have learned that this great health day is ALWAYS a precursor to two to three "down days," where I am very very sick... Anyone else have this???
 
It doesn't matter what I do or what I eat - I haven't had dairy in twenty years. I haven't had gluten in three. I eat meat very sparingly (was a vegetarian on and off for fifteen years), and take B12 and calcium daily. I should be healthier than ever! But I am not. Hopefully, these last blood test results will give me an answer.
 
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2012 9:12 AM (GMT -6)   
I've got the nail problem myself I haven't been told I have Raynauds officially but suspect it.
If I get sick it always seems to go straight to my lungs and sinuses.
I'm allergic to almost everything they tested me for the local area exposures. The only thing I'm not allergic to is a beech tree!

During those "super high Energy days" are you very active? If so, you could be overdoing it that day.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Pain in tx
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/12/2012 8:22 PM (GMT -6)   
confused
I had a positive Ana in 2005. My doctor told me that I had little soldiers attacking my good muscle tissues. That was it! Then, I kept going back to him over the years with pain. He then said it was fibromyalgia. Is it true you have to have all positive Ana to be diagnosed with Lupus?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/12/2012 8:32 PM (GMT -6)   
Lupus is diagnosed, per CDC and Lupus organization, by 4 of 11 symtoms. ANA is only one of these. So yes, you can be diagnosed without a positive ANA.

See my previous post for finding a Dr that is familiar with Lupus and qualified to diagnose it.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/13/2012 9:01 AM (GMT -6)   
Thanks for all of your responses! Luckily, I got the results from my last blood test back (I always get a copy myself) but haven't seen my rheumy yet. My WBC was low again, as well as neutrophils and RBC count... I was again negative for ANA, and negative for the dsDNA...
What is alarming is that my IRON was high, but Ferritin is low. Also, my glusose level was somewhat high. This is so odd because I do not eat many sugary foods at all (am almost averse to them), and rarely eat red meat. So why would these levels be high?
I don't know. I can sit here and research all I want but it's still a mystery to me. Furthermore, my hands and arms are quickly becoming more arthritic - worse and worse each DAY, it seems. Although I'm on the thin side, my stomach has been distended, as well, and I can't eat much lately.
This is probably not the place to try and figure out if something besides Lupus is going on, but maybe these symptoms can be attributed to Lupus?
BTW: I have been tested for Lyme's, Herpes, Hepatitis A B & C, and AIDS - all negative.
At this point I am just going to take all of the meds prescribed, I guess, so that I feel better until we figure this out; or maybe it is simply fibro? It's really hard for me to take a bunch of pills - I believe in everything natural - but they are the only things that alleviate the pain and minimize the depression!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/13/2012 11:23 AM (GMT -6)   
Try not to fret. Your doctor will be able to tell you what it all means.

So relax for now and try not to worry. Take your medicines and wait to see what the doctor thinks.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/14/2012 9:13 AM (GMT -6)   
Thanks, Joy :) You are right - it does absolutely no good to worry!
 
My rheumatologist called me to tell me not to worry, as well. He said that I have the option of seeing a hematologist because he thinks, if there IS any "specific" problem or cause for my symptoms, it has to do with a blood disorder. BUT, he emphasized that my iron and glucose levels are not dangerously high, and my low levels are not dangerously low. All of the results having to do with liver function were also within th normal ranges. 
 
I definitely feel better about it all now, and will wait for my new insurance to kick in, see how I feel, and then move forward from there.

XSusanX
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/14/2012 2:34 PM (GMT -6)   
I am here on this forum for the exact same reason! I am looking for a good suggestion for a doctor in southern New York who isn't so stuck on bloodwork results. The Lupus foundation doesn't list resources or a website for a chapter in my area, there's just an 800 number. I left a message with them to call me back.

daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/18/2012 1:35 PM (GMT -6)   
Oh! Good luck, Susan! Let us know how it goes! It makes no sense to me how a doctor can be aware of your symptoms, your family history, and still base his answer solely on one blood test result...
 
Understandably, there are hypochondriacs in the world - I've probably been accused of being one - but really, what sane person would WANT to be sick? And, if someone were to feign sickness in order to get prescription narcotics, wouldn't they let the subject drop after receiving those? I think THAT was the moment that MY rheumy truly started believing me - after he wrote some scripts for strong medications (for anxiety and pain), and I still did not feel "right" and informed him that I believe that something else is going on with my body...I did find out that my doctor is on the list as being a member of the Lupus Foundation, and trust his diagnosis, but now maybe a hematologist can tell me exactly what is going on. My sister is a nurse and told me that I definitely have neutropenis, but we don't know WHY yet. That's the next step, for me. (I always wondered why I got sick so often! She tells me it's because I am neutropenic?!)
 
Anyway...!!!
Let us know if you get a call-back. Best of luck !
 
 

daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/18/2012 1:37 PM (GMT -6)   
LOL ! I misspelled neutropenia in my previous post........ OOPS! A Freudian blunder?!
((sorry))
 

Jujubeee714
Regular Member


Date Joined Jun 2012
Total Posts : 26
   Posted 9/18/2012 2:43 PM (GMT -6)   
It doesn't sound like your bloods are really too out of whack. Did you have your sed rate and complement levels checked? They can be helpful markers in dxing lupus. Unfortunately your rheumie is stuck in his thinking. I suggest a new one. Completely. Many lupies are seronegative. ANA's change and don't even reflect disease activity so a good rheumie will LISTEN and consider your symptoms and genetics.
Good luck, and my best to you. Love Julie

daydreamer333
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/21/2012 10:10 AM (GMT -6)   
Hi Julie - I agree that my blood levels aren't terrible...But so many things are borderline, as well. For example, my Complement C3 was 75 (normal range 75-175) and my Complement C4 was 15 (normal range 14-40). My SED rate was 4 (0-20 being the norm). My monocytes were high at 9.1 and 9.4 (norm being 4-10), while abs neutrophils were both low (1.7 and 1.9, norm being 2.16-8.00). My folate levels were really high at 24 ng/ml, as well as the iron.

I have no idea what all of this means yet - I'm so sensitive to things (food, smells, sound, sunlight - typical of fibro sufferers), one small change could make a huge difference in my life...Which is why I am scurutinizing everything. What if it is something as simple as, I eat too many green vegetables? Or, my body stores too much iron, so I should donate blood every month? It's easy to change things like that, and maybe feel better! Know what I mean? A hematologist can help with more of this, hopefully.

Have a great weekend, everyone!!! And Happy Autumn :)

HopeOn12
New Member


Date Joined Sep 2012
Total Posts : 11
   Posted 9/30/2012 7:56 AM (GMT -6)   
Hello, I too am struggling with a myriad of symptoms and trying to find answers. I initially thought lupus or RA for sure but then someone suggested Lymes. I know you said you have been tested with neg result but in my extensive research on the disease I have found that the traditional western blot test misses a high percentage of Lymes. The only way to truly get an accurate diagnosis is to see a lyme literate doctor (LLMD) and have the bloodwork done through a specific lab that provides a more complete result. I would highly suggest that you get out the lyme disease forum for more info and be tested again for lymes. I have 2 friends with fibro and the symptoms you describe do not quite fit fibro. My doc has also tried to label me fibro but my symptoms don't quite fit. Fibro pain is muscular with tender muscles that have a pain response to touch/pressure not joint/bone pain! I swear sometimes my docs look at me like I wouldn't possible know the difference between the two pain sensationsn it's maddening! I hope you find some concrete answers soon. Trust your gut and keep pushing and you'll get there!

Flower2
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/7/2012 5:47 AM (GMT -6)   
sad  
 
I have been sick for 18 months   backwards and forwards to doctor with ME type symptoms, headaches, bowel problems, unexplained alternating high blood pressure weight loss . Taking sick retirement (im an academic)  but everyone has told me it is primarily stress. Went to Spain in August since then severe hives and racial rash. Last few weeks symptoms have accelerated with numb toes, jerking at night. Told my GP I thought I had lupus and she told me to get a life...told me I was somatising because my ANA test and Anchor test were negative. When i said my steroids for the hives could negative the test she told me to quite focusing on every little symptom. Severe nuerological symptoms this week seeing Lupus specialist tomorrow, but have been told by a Consultant medic i saw in emergency yesterday that he is pretty sure its Lupus too...
 
Just hoping its not CNS Lupus. I intend to sue my GP when I am well enough....my advice is to fight and follow your own intuitions..The consultant said that listening to my fear has been protective...Im just hoping tht is the case...
 
 
 
Flower 2   .
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