PDA

View Full Version : crazy?



sickofbeingsick
04-21-2009, 07:49 PM
Hi everyone,
I am in limbo. Had labs drawn, and everything negative (ANA, sed rate). I just don't understand what is going on with me and I don't see rheum til August. I have such bad brain fog that I stumble over words and sound like an idiot. And I know I am not. I am so tired I can't function. I was out in the cold (also the sun), and ended up with such bad leg pain, and red cheeks and nose. Everyone thought I had a bad sunburn. I was out for 10 minutes and always wear sunscreen. I get red cheeks and nose occasionally. Always thought I just had a "healthy glow" that lasted a few days. Dr put me on neurontin for pain for FMS. I am chronically anemic and have low platelets. I go through periods of weight loss, fevers, pain, exhaustion. Does anyone ever have SLE with a negative ANA? When I read the 11 criteria, I have at least 8. But my dr hasn't observed all of them. They aren't all the time. Am I crazy? I have chest pain when I breathe but chest xray was "essentially negative". I hate medical lingo, and I work in medicine.

Saysusie
04-21-2009, 09:05 PM
Yes, there are those with Lupus who have a negative ANA. In fact, the condition is called ANA-negative Lupus. ANA-negative lupus is a condition in which your ANA (or antinuclear anitbody) test comes back negative, but you continue to exhibit traits and symptoms consistent with someone diagnosed with lupus.
IMPORTANT: The ANA test is used to screen for lupus, not diagnose it. Therefore, doctors SHOULD NOT rule out Lupus if the ANA is negative. Conversely, doctors SHOULD NOT diagnose Lupus based solely on a positive ANA.

If you test positive for the antinuclear antibody (ANA), it means only that you could have lupus. Further tests are needed to determine if you do, indeed, actually have Lupus. Those include tests for Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) antibodies.

If the antinuclear antibody (ANA) test is negative and you display traits and symptoms of Lupus, you should be tested to see if you have the following four indicators of Lupus:
1) High titer anti-double stranded DNA antibody
2) Anti-Sm (Smith) antibody
3) Biopsy-proven kidney disease
4) Biopsy-proven skin disease

If you have all four of the above referenced traits, you will, most likely, be diagnosed with SLE. If not all four, than any diagnosis is presumptive. It is presumed you have lupus, even if the ANA test comes back negative.

In the absence of a positive ANA with Lupus traits and symptoms, some doctors might call your condition “mixed connective tissue disease,” “undifferentiated connective tissue disease,”.
Undifferentiated connective tissue disease usually means that symptoms have not developed enough to diagnose any specific connective tissue disease. Doctors will usually wait until more symptoms develop before making a definitive diagnosis.
Mixed connective tissue disease means that you are displaying symptoms of one or more connective tissue disease, but not enough symptoms to diagnose one specific disease.

Lupus is a difficult disease to diagnose, partially because of the reasons above. A good doctor will, regardless, treat your symptoms so that you can get relief. Speak to your doctor about running further tests (as mentioned above) and about treating your symptoms.

I wish you the very best
Peace and Blessings
Namaste
Saysusie

gina
04-22-2009, 04:59 AM
The last lab test i had was negative ana. my doctor said doesn't mean the sle has gone away, since my labs in 2005 where they tested the tier, pattern of blood and something else not sure but at that time all were right on the mark for sle.
so she said i still have lupus but thought that maybe my flare was over, and at that time i didn't have any pain just the fatigue and other stuff i usually have.
ask for more blood test like sasussie said. good luck keep us informed.

mountaindreamer
04-22-2009, 05:03 AM
hi sickofbeingsick,

i am so sorry you have been battling with all of this, but i am glad to see you back, i have wondered where you were. i was hoping you were just out having a good time.

in addition to saysusie's incredible information, i want to add that the lupus symptoms are intermittent, so you should keep a log of the different symptoms as you experience them. for years, my dr. would ask about symptoms, and i always responded with the negative because i was not experiencing the symptom at that particular time....this delayed my diagnosis. it was this forum that educated me on this, and when i listed the symptoms over the past several years, my dr. easily diagnosed me....all the while i had a positive ana.

good luck, please keep coming around, and we can help each other.
you have been missed and i am glad you are back.

rob
04-22-2009, 07:12 AM
Hi sickofbeingsick,

Looks like Saysusie has the info you need. I just wanted to say that I stumble over my words all the time too. It's easy to feel stupid, but you are not, and neither am I. In fact, the way we can still function despite brain fog makes us smarter than the average bear! That's how I see it anyway. I also get some rather severe chest pain, and it's caused by Costochondritis. Basically inflammation of the connective tissue of the ribcage. It can be scary because it can really hurt, but it's not really dangerous, just painful. I take naproxen when it happens, and it helps. Anyway, you're not crazy, it's just that Lupus likes to move the goal posts and change the rules of the game too often. It's good to see you back, I hope you start feeling better soon.

Rob

MicRoMediC
04-22-2009, 02:58 PM
I too have problems with my words. Sometimes I use the wrong word or can't think of the word I want to say. This really frustrates me because I'm in a clinical setting and people look to me for advice. It's not that I don't know, it's that I just can't get it out. I almost feel like a mute. You're not crazy. If you were, we'd all be. It just sucks and nobody really truly understands our disease and how to really treat it. Anyway, we're all in the same boat. I'm sorry to hear you're having such problems.

Angel Oliver
04-22-2009, 03:37 PM
Yesterday in a shop i said oh grantastic.......meant to say oh great fantastic! So you're not alone there.

wrightrs
04-22-2009, 04:52 PM
I'm the worlds worst word stumblers!!! Can't write, spell, think, or walk.

sickofbeingsick
04-22-2009, 06:09 PM
Thanks so much for all of the support! I am sorry that everyone struggles, but I am so glad I am not alone! I often feel like there is no one that understands. I am thankful that I came across such caring and insightful people.

wrightrs
04-22-2009, 06:21 PM
Your so welcome. Hope you get your answers from your blood work soon!!!! I also hope your feeling better!!!

froggal
04-22-2009, 11:01 PM
I know that I have said this before, but I really do think that waiting for answers is often the worst part about being chronically ill. It is so awful waiting around for the drs to figure out what is wrong. I think as far as your symptoms go, the best advice I can give you is just to chart everything. It has worked so well for me to just write everything down so when I did see the dr, I had very specific info about my symptoms. I also have found that it helps a lot in determining when I am going to have a flare. I hope that you start to feel better and get some answers soon!

lucky7
04-23-2009, 01:43 PM
I agree Froggal!! The waiting is DIFFICULT! Just gotta be charting our symptoms,eating right,exercising,taking our vits and herbs,and getting our well needed rest in the meantime huh! Lets take control i say of whats in OUR POWER to make ourselves feel at least a little better while we sit back and wait! ;)

teresaa40
05-03-2009, 02:50 PM
I have been so frustrated for the past year that my formerly wordsmithing brain just seems to go on its own little journey, around the word I want to say, and sometimes comes up with weird combinations that make no sense at all. It's embarassing, since I am known for using long words and carefully crafted sentences. Now, Im starting to sound like I would have a hard time out speaking a two year old, sometimes.

There are times I know I have the word somewhere, but, stumble around my brain trying to find it, and feeling pressured to hurry up before someone else finishes my sentence for me out of either pity or wanting to just get on with it.

Is there any hope that my brain will recover, or am I just doomed to get worse?

lucky7
05-04-2009, 01:16 PM
Hi Teressa! NO, you will not get WORSE if YOU tkae the best care possible of yourself my friend! The little things matter. I get the brain fog too, but when i do i get the extra rest i need or i cut out the OH TOO MUCH SUGAR ive been takeing in more than usual! LOL I just try to make some adjustments and those CAN REALLY make a difference, but unfortunately you WILL have this inevitabaly (see, i dont think i spelled it right! LOL). You just NEED to be AWARE of your life around you to make changes when need be! You will be OK! We understand, youre not alone!:cute: