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Old 02-20-2003, 02:09 PM   #1
Lisa T
Join Date: Jan 2002
Location: Ohio
Posts: 327
Lisa T HB User
Question Not sure if I belong here!!!!

Hello! I'm not really sure this is where I should post or not!?? I have alot of questions, and I feel as though I'm searching in the dark, so please bare with me!

Gosh I don't know where to start. My doctors won't test me for lupus. Is there a way that the normal cbc tells anything about lupus? I'm always told that is is average. So many of my symptoms go right in one ear of my doctors and right out the other one. I have seizures. These came out of the blue. No reason, no nothing from anyone except it happens. I also have extreme fatique(sp) along with joint pain and swelling. With lupus, does the joint pain move around? It started very severe in my elbow (right), then the next day it was also in my left. This went on for two weeks. I couldn't even straighten my arm. My GP did blood work (cbc) found nothing and said it was probably a viral infection that would go away. Well my elbows are better, but my knees are bad. I also have soreness in my hip muscles. I get low-grade fevers all the time now that he can't explain. My neck gets very stiff and I have on and off again sore throats. I have also noticed that my hair is coming out at an alarming speed. I got my hair cut above my shoulders to see if it was from the everyday stressors. For the last week and ahalf I have been able to fill a sandwhich bag up everytime I brush my hair. I have always lost alot of hair, but this is way more than I ever have before. I have a dermatologist appointment in the middle of March, but that seems so far away! Is this a sign?

For a year now, i have toes that go numb. It first started with one, and now has advanced to three. I'm not sure if its Raynoud's or not. It comes and goes, but not always when my feet are cold. Any ideas?

I also sweat more than what I used to. My job is very physical, but I never soaked my shirts until a few months ago. It isn't exactly a pretty sight for a 29 year old female!!!! That might be associated with my seizure med (dilantin 400mg) I'm not sure. Something else that my friends at work have noticed, is how ofter I get flushed. Usually I'm told how red my face is. Sometimes it feels as though it is on fire and other times I'm not even aware of it. I am under flouresent lights at work. I have never noticed any rashes, so does that rule lupus out? Or can you have it and never have a rash?

I'm sure I'm leaving out stuff, but I guess that is the basics. If someone could just give me an idea if maybe I'm looking in the right place. I have a neuro appointment on the 26th and would like to go in there armed with lots of info. Will he be able to test me??

Thanks so much for taking time out and reading this post. As I said, I really feel out in the dark and could use some good advice!! Thanks in advance

Hope all is going well for you today!


[This message has been edited by Lisa T (edited 02-20-2003).]

[This message has been edited by Lisa T (edited 02-20-2003).]
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Old 02-21-2003, 09:03 PM   #2
Senior Veteran
Join Date: Aug 2002
Location: Staten Island, NY USA
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purple2067 HB Userpurple2067 HB Userpurple2067 HB User

I don't really know anything about this, but could the seizure med possibly be causing any of the other symptoms like the hair loss? I have a friend who has been on a lot of seizure meds and she has very very thin hair, and not much of it!

Old 02-21-2003, 11:56 PM   #3
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Join Date: Feb 2003
Location: Wichita, Ks. USA
Posts: 33
quackers HB User

Hoo boy! You better strap in and hold on tight cuz you're in for one heck of a medical ride. And it's not fun. It's frustrating to say the least. I have complained for YEARS of all the symptoms you have just described. About 7 yrs ago (after a few months of prozac and I still say it is prozacs fault), I started haveing memory problems. They never really ever went away but were never really bothersome either...until recently. Within the past yr I've gotten to the point where I couldn't remember what I had to eat for breakfast, lunch or supper, 20 minutes after I had eaten it. I couldn't get my DR to take it seriously (he did run a few blood test but everything came back 'normal') and was crying to 'momma' about it one evening and she told me to tell the Dr that I recently had a grandmother die of complications d/t altzheimers. Boy oh boy...he had me to a neurologist within a month (it usually takes months to get into see one) and then my whole world as I knew it turned upside down. It consisted of one test after another, one appt after another, one specialist after another. I am so sick to death of doctors that it is actually killing me to know that I have to go see this Rheumatologist (for fibromyalgia) (which was diagnosed with the +ANA Lupus) next week. I don't want to go but my husband is making a big deal out of it. I guess they discovered that I have antiphospholipid syndrome (whatever that is). I know they'll want to put me on a ton of medicine and I'm gonna have to tell them "NO". I am so sick of doctors and medicine that I stopped all my meds. I now take a blue green algae capsule for my memory, which does seem to be helping and I take a honey-vinegar tonic for everything else and so far that doesn't seem to be doing a thing for me.

You might also have your doctor check you for Fibromyalgia. all the symptoms you listed are also symptoms of Fibro. To tell you the truth...I really doubt that I have +ANA Lupus. I think it is all Fibro and I just tested positive for Lupus cuz my Fibro is really out of whack (I hurt like a sun of a gun all over!). I'll find that out in August when I go back to be re-tested on the +ANA lab work.

I have what the Neurologist told me is +ANA Lupus. He said I didn't have the 'bad' one which I interpreted to mean 'SLE lupus'. I know just because you have a positive ANA reading and all other test results come back negative for ANA, it doesn't mean that you don't have it. And the same goes in reverse. Just because you might not have a positive ANA, it doesn't mean you don't have it. But trying to convince the 'know it all' doctors of this is impossible. An Example: I was having gall stone symptoms for over 9 amount of test showed anything about gall stones so Dr refused to take it out and I couldn't convince them otherwise (w/o positive gall stone test, insurance won't pay cuz it's cosidered 'elective'). I suffered for OVER NINE yrs with GERD like symptoms and WAS diagnosed with GERD instead of gall stones, until I got so sick my gall bladder almost burst...and then I got my gall stones taken out. It's been 3 yrs and gastro system is about 90% recuperated and I can mostly eat what I want now.

That's just one example of how DR's don't always know.

Some of the test I had to go thru are an regular and contrast MRI, sleep deprevation EEG, CAT scan, Neuropsychology test (extensive IQ test), Kidney specialist, EENT specialist, spinal tap, half a doz dif lab test (a total of $7000.00 on lab work alone, over 300 various test run on just about every bodily fluid!!!). They definately know that I'm not storying about my short term memory loss cuz it showed up in the psychology test, but they have no idea of what caused it, if it's disease related and why some of it seems to be reversing it'self since I stopped taking my meds and why some of it's not. I'll probably never know, altho' I have my suspcions. #1 is that I was over medicated and #2 is that it's caused by the Fibromyalgia. But then I discover that ppl with Lupus can have memory problems also. Ranging from very mild to full blown dementia. SOOO....who knows what any of these symptoms mean. My best bet would be to start with the Neurologist and if your insurance allows it, see a Rheumatologist at the same time. Kill 2 birds with one stone cuz I would almost bet you have Fibro.

Take care and let us know how everthing turns out.

Old 02-22-2003, 12:28 AM   #4
Denise F
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User

Sure sounds like Lupus. You might want to wear sunscreen
at work for the lights. They have been known to
agravate lupus. You might find out that wearing sun
screen will help calm down the symptoms a bit. It's
worth a try.


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