Undiagnosed lupus? PLEASE comment!!

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New Member

Date Joined Oct 2009
Total Posts : 7
   Posted 2/7/2010 5:52 PM (GMT -6)   
Hi everyone
I just wanted to share some of my story with everyone to see what your thoughts would be.Im a 20 year old female, I have been having symptoms for almost 2 years now and have not gotten a proper dx yet. I have ofcourse been researching the heck out of every possibility and lupus has been thrown my way several times. Some of the symptoms that I have been experiencing are:
* Fatigue( feel like falling asleep while driving)
*Brain fog
*sensitivity to hot and cold temperatures
* Change in periods( they are so messed up and off its rediculous)
* Night sweats/ insomnia( barely make it through a night without waking up either because im hot or just wide awake)
* Photosensitivity( break out with a red leather-like bumpy rash on arms, neck/chest,and face that is extremely itchy and painful when in the sun)
*Memory loss ( more short term )( forget thoughts or words)
*loss of concerntration
* A change in vision( blurryiness, sensitive to lights, UV lights to be specific)( i cant really wear contacts anymore or my vision just BLURRSS all the time)
*eye pain and cluster headaches
* Migraines
* Pretty much always cold- my hands, feet, and nose are always freezing. Im always freezing in my house when its 72degrees)
*Shortness of breath
* chest pain
* higher heart rate than usual ( ranges from mid 80s-high 90s)
* Joint pain and stiffness( hands actually get stuck closed and ill have to open it with my other hand- not painful thou)
*Tingling in arms when I use them( its really a struggle to do my hair in the morning half the time)
* muscle weakness
*nausea( new)
*moodiness, slight depression( just an overall change in my mental state)( i feel like a differnt person)
*hair loss( i was developing a baldspot for awhile but now it seems to be ok but my hair is everywhere!!!! so much comes out in the shower and when i blow out my hair and straighten it)
* When I move semi-too fast or just at a normal speed really- like getting off the couch or out of bed i get dizzy and my vision goes fuzzy
*increased sense of smell ( so sensitive to chemicals and fumes)
* burning sensation on my ears and face ( sometimes they turn red)
* Itchiness on the sides of my ribs( no rash or anything)( doesnt go away with cream)
*possibly butterfly race ( quite faint sometimes thou)i just started noticing this about 2 weeks ago and its only happen twice)
* i just basically cant do anything i use to anymore because it leaves me short of breath or leaves me arms and legs tingly and tired) (walking up stairs, cleaning, basic everyday things are a struggle)
The crazy thing about all of these symptoms is that they all never happen at once and come in flares. Ill have good days/weeks where I feel semi-normal and then ill get hit with a flare and not be able to get out of bed bc i just feel like crap. But i have just noticed lately that i feel like im getting worse. What ever is going on with me now just really seems to take a toll on my head and chest and vision really. Its kinda scary.
The thing that really drives me nuts about all of this is that i think an autoimmune disease runs in my family. My mom suffers from very similar symptoms as me as well as my sister ofcourse all of us are undxed and im the only one that is really determined to figure this out s my symptoms are alot worse and affect my life more. I know that my mom was briefly diagnosed with Rheumatoid arthirtis but then when they tested her again it didnt show up.. so im not sure on what to think.
I should say that i currently dont have health insurance. I am working on getting a decent afforable one asap. I lost it back in December but saw some drs before hand and tried to figure this out but ofcouse i got no answers. I didnt get a chance to see a rheum. which i was told to see. I work in a internal med drs office part time so i get to see the nurse pract. there which is great for free and they do blood work and anything else possible for me but there is only so much they can do .Everything in my bloodwork seems to comes back fine. The only thing that i did find out was that i carry a gene for celiac disease(HLA-DQ8(DQA*03/DQB1*0302)was positive. Lyme was ruled out. She really wants me to get a MRI of my head to rule out MS. Then see a rheum. and nuero dr to see what else can be done.. I was having bad GI problems in the beginning but that seemed to go away . The dr that i am seeing now possibly thinks that i could have MS but i have also read that LUPUS can mimic many things including MS and the joint pain and photosensitivity are more of a lupus symptom.  Right now Im on Metoprolol(blood thinner) to help me withmy high heart rate and palpitations, the possible conditions that my DR thnks i have  right now for the way I feel is either carotid disease( bc of my heart rate, migraines, and visual disturbances) which i dont think i have because it doesnt explain all my other symptoms or MS which could be possible but doesnt explain the joint/bone pain or skin issues. I was also wondering if anyone has had weird things go on with their skin. I have these small rough patches of skin on my arms that kind of feel like a scab and itch a bit. When the rough part eventually goes away it leaves my skin whiter in that area. I have a few of these white spots now on my arms. I have no idea what they are from. No amount of moisturizer makes them go away. Also, this past week I have noticed this reddish/purple blister looking mark on one of my toes thats painful to touch and itchy. I have no idea what it is at all! its not a bump or anything it seems flush with my skin but its just odd because its only on one toe. ALso a few eeks ago i noticed these small blood spots show up on my sides of my abdomen and on my arms but they seem to have gone away now too. I just feel a bunch of weird stuff is happening to me.. its driving me nuts!! IM sorry if all of this is kind of scattered but i guess you can say that another one of my symptoms. But anyway i would really appreciate any feed back from anyone that has been through the same thing as me. Thanks in advanced!!

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/7/2010 6:37 PM (GMT -6)   
TAKE PICTURES OF ALL RASHES OR DISCOLORATIONS!!!!!!! Very important. I would say hold off on any more work up until you have uinsurance because if you get dxed before insurance it will be a pain to get coverage. I don't know if you have lupus but I do know a rheumy is a good idea but make sure the rheumy is a lupus specialist because a lot of them aren't
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Jan 2010
Total Posts : 21
   Posted 2/8/2010 1:59 PM (GMT -6)   
On the itchness without a rash, I get that too on my upper arms.
When I was at the PCP office having my blood pressure checked, I told him that I know that when he takes that cuff off, my arm starts itching like crazy. He didn't know why. I can be laying on my side in the bed with my head resting on my arm and it'll start. No rash or warning, just itching. I figured that must be like a blood flow thing.
I don't know. Couldn't go to Rheumy appt today, 7 in of surprise snow fell in Memphis. A big surprise!!!
Hugs, msfroggi

New Member

Date Joined Oct 2009
Total Posts : 7
   Posted 2/8/2010 5:31 PM (GMT -6)   
Thank you guys for replying. Its nice to hear from other people with similar issues.. kinda makes you feel like your not the only "crazy" one!.. I have been taking pictures on my phone so when the time comes i can show the dr exactly whats going on. I just cant figure out this reddish/purple mark on my toe! i also found it on one of my other toes on my other foot. I woke up in the middle of the night last night with my toes itching like crazy!! i dont know whats going on there. Another thing that i cant seem to stop getting is burning hot ears. I have them right now and i usually get them almost everyday .. its all so weird and random but i just cant wait to actually get a diagnosis so hopefully they can give me something to make it feel better. Its weird how getting a diagnosis could actually make you feel better than not having one. hmmm.. well i hope you guys are feeling well. Im looking forward to the snow we are suppose to get in NJ tuesday and wednesday ... I hope its atleast 1 foot!! haha a couple inches is just a tease!

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 2/15/2010 10:29 PM (GMT -6)   
Gosh! I am new here. I have been reading a lot of posts. Looks like I am in for a looooong hawl. I also itch like crazy sometimes at night. Mostly my legs. I don't have a dx either but I have alot of your symptoms and everyone elses too. We only have like 12 rheumy's in this state so I hope mine is good. I have only seen him twice and he says no sence coming back unless I have more symptoms. In the meantime I am getting worse. I can't believe! that thier is so many of you going through this. Makes me angry and sad.

Regular Member

Date Joined Feb 2010
Total Posts : 55
   Posted 2/16/2010 11:56 PM (GMT -6)   
I presented with fatigue at 20, but my PCP said it was CFS. I kept searching and finally went to a rheumy who diagnosed me with lupus. My bloodwork shows a negative ANA, though. (Rare, but it can happen.) My rheumy is AWESOME. He's really smart, and more than that, he BELIEVES me. Find a doc that believes that you think there is something wrong, and he/she will help you figure out what it is. Also, my rash is pretty faint as well, just looks like a mild sunburn, but sometimes my cheeks tingle. It's not always as bad as you see in pictures. Best of luck!

PS- keep being proactive in your search. You are your own best advocate!

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 2/17/2010 12:19 AM (GMT -6)   
A negative ANA screening test of any type does not rule out an auto-immune disorder!

Having lupus with a negative ANA is actually not that rare. Many of us on this board don't have a positive ANA -- a good rheumy knows that a Lupus diagnosis is based on having 4 or the 11 symptoms as determined by the American College of Rheumatology.

However, there are a lot of people (PCP, Internists, other doctors, even some rheumies) thinking they can say "it's not lupus" strictly because of a negative ANA. That is WRONG!

Lupus is the diagnosis of elimination. A positive ANA only means you *may* have an auto-immune disease, of which there are 20-30 possibilities. Careful screening of your medical history and symptoms is used to determine which illness you may have...and lupus is only 1 possibility of several.

The bottom line is that + or - ANA by itself means nothing, it's the presence or absence of a set of symptoms that narrows down the diagnosis.

Just for reference, here is a partial list of auto-immune diseases which might be looked at if you have a positive ANA:

Systemic Autoimmune Diseases
--Rheumatoid arthritis (RA) and Juvenile RA (JRA) (joints; less commonly lung, skin)
--Lupus [Systemic Lupus Erythematosus] (skin, joints, kidneys, heart, brain, red blood cells, other)
--Scleroderma (skin, intestine, less commonly lung)
--Sjögren's syndrome (salivary glands, tear glands, joints)
--Goodpasture's syndrome (lungs, kidneys)
--Wegener's granulomatosis (blood vessels, sinuses, lungs, kidneys)
--Polymyalgia Rheumatica (large muscle groups)
--Guillain-Barre syndrome (nervous system)

Localized Autoimmune Diseases
--Type 1 Diabetes Mellitus (pancreas islets)
--Hashimoto's thyroiditis, Graves' disease (thyroid)
--Celiac disease, Crohn's disease, Ulcerative colitis (GI tract)
--Multiple sclerosis (There is still some debate as to whether MS is an autoimmune disease.)
--Addison's disease (adrenal)
--Primary biliary cirrhosis, Sclerosing cholangitis, Autoimmune hepatitis (liver)
--Temporal Arteritis / Giant Cell Arteritis (arteries of the head and neck)

For a more complete list of autoimmune conditions, visit the Patient Information page of the American Autoimmune Related Diseases Association, Inc.

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

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