View Full Version : new here-waiting on bloodtest results, and in need of advise
10-15-2008, 10:07 AM
My Name is nicole, im 31 yrs of age....I have been tested for Lupus twice before, but the ANA test has always come back negative. Since I was 6 months pregnant with my daughter, I have had so many symptoms of lupus. I have been diagnosed with fibromyalgia since may of 08. I also have had pcos and endometriosis, which caused me to have a hysterectomy 2 years ago. my gallbladder was taken out at age 23.anyways, so here below are the issues I have had the past 9 years, everything I have read has pointed to lupus:
pleurisy-started when my daughter was 6 months old-reappears when i have allergies or colds
unexplained and random fevers
stiffness, swelling, and pain in joints-legs and arms
rash on face and ears -sometimes feelslike my face is on fire
burning sensations in legs
face feeling numb
in the winter-my hand and feet are so cold they change colors
difficulting getting words to come out as i want
elevated liver enzymes-last recent blood tests
i have been tested for MS as well, but that is a no. i know this is more than just fibro pain and all of me experiences point to lupus. my test results should be back soon, so i was wondering in the meantime-can you have a negative ana result and still have lupus? does my symptoms seem similar to yours? im so irritated by not getting any answers! ive been to rheumatogists, family docs, ents, and neurologists, and the ER for pain when it become so severe. i also have mild degenerative disk disease. some times i feel so stupid because my memory isnt what it used to be, or i feel im trapped in an 80 yr old body because it is difficult to do normal daily things without getting so fatigud and because of the pain.
i also feel like sometimes the docs think im out for meds, maybe because i have alot of tattoos-to them i may seem like its all in my head. but im just a normal person aside from all my tatts, im a single mom to an awesome child, and dedicated my life to her. but sometimes my ilness interferes with doing normal daily things, like play with her, or even go to work. in june, i went to the ER at 2 in the morning for a 102 fever, i had extreme cold chills to where i was shaking hysterically like my whole body was frozen, and there was the worst pain in my bottom and back of legs like it was on fire and i couldnt even walk. the docs thought i had a blood clot but it turned out i didnt, so they released me after a days admission and observation-leaving me with all these questions in my head and no diagnosis. the next ER visit came when I was at work. my left side of my face was numb and tingling, then behind my ears then down the left side of my arm. it felt almost like my previous pleurisy attacks ive had but the numbness was scary. the doc said i had bells palsy but to me thats weird because my face wasnt droopy like it is supposed to. im really scared because i seem to be getting worse and each time this weird illness attacks different parts of me. please-any advise? i have already been through 2 divorces due to me always being ill,im afraid no one will ever love me enough to stay with me when i have all these issues.
10-15-2008, 11:46 AM
Gentle hugs to ya starrval and welcome,
First of let me say that a negative ANA test does NOT rule out lupus. A lupus diagnosis is a tricky thing to nail down.
I've had one positive plus a boarder line and a negative ANA test. I am still not diagnosed even though I've had symptoms since I was 19 years old and I an now 48 yrs old.
My mother had lupus and my sister has it as well.
I've had a butterfly rash since I was 19 yrs old. Also the rash that you described as feeling like your face is on fire.
I have had a possitive biopsy for another lupus related rash. I am very sensative to sunlight. It makes me weak and ill to my stomack.
Fatigue, poor memory and a raft of other goodies.
two years ago many of my joints suddenly flared up with arthritis. Usually there is a warning of stiff and achy joints. One morning I woke up and my limbs were swollen out and I cound barely stand let alone walk.
Most of the medication they use for treating lupus would not do a junkie any good :lol: so if your doctor's are thinking you are just after pulls then they are full of it!
My heart goes out to you. Being a great mom and having so much on your plate...you deserve some answers. Push for them.
The doctor's should know that they need to keep testing till they get the answer.
I'm still pushing and I wont give up. It's my life and quality of life on the line.
I'm sorry you are having to battle this and feel so isolated. This is a great site. There's lots of caring and informed people here.
So welcome, make yourself at home. Ask anything you want ... it's a pretty informal site and very accepting.
Each of us displays similar and yet different symptoms of lupus. There are a lot of cross over issues like lupus that people are dealing with.
Read the posts in the symptoms area, feel free to comment on peoples posts or place a question.
Hope you get the answers you deserve soon, in the mean time we are here for you :)
10-15-2008, 11:50 AM
My name is Kathy. I have SLE Lupus and Sjogrens and several other Auto-immune problems. Yes it is possible to have Lupus and not have a positive ANA for it. It is called Sero-negative Lupus. It is quite rare, but it is possible. There are some folks that come in here that are Sero-negative. They do not only diagnose Lupus just by the ANA. You have to meet at least four of the criteria that is listed by the Lupus Foundation and it looks as though you do meet the criteria for it. I think you need to find a good Rheumatologist that will listen to you. I would hate to think that they would treat you differently due to the tattoos as tattoos do not make up who the person is. I know what it feels like to have the doctors treat you like there is nothing wrong with you when you know that there is something wrong big time. I went for years before I finally got a doctor to listen to me and hear me and thoroughly test me for Lupus. I am not Sero-negative. It did show up in my blood by the pos ANA and various other tests. Have they done a Sed Rate on you and if so, was the Sed Rate elevated, because that would be an indication of inflamation going on in your body. You need to write all of your symptoms and family history down and see your family doctor and get a referral to a good Rheumatologist. You have the right to be seen and have them fully investigate what is going on. I am also wondering if you have been tested for Ankylosing Spongilitis due the degenerative disc disease. Please do get in to see another Rheumatologist and tell them that you need answers as to what is going on with you. I hope that you get some answers and soon.
10-15-2008, 01:02 PM
thanks, its nice to know that im not alone. i get so frustrated sometimes having to explain that i just cant go out with friends, or have to go home when im somehwere due to the pain becoming unbearable. you have already lifted some up my spirits up tiday, and i thank you! heres a little story of my life to share:
my 8 year old daughter is so loving and understanding of what i go through and defends me to the fullest.one night my mom was talking to a cashier lady at kohls for 5 minutes, just chatting away, and the whole hr we were there ( i was getting new work clothes due to my flucuating weight gains and losses) my legs were in real bad pain, and feeling tight to where i couldnt stand any longer. i told my daughter to go tell my mom(her nana) that we have to leave because my leg pain was getting worse. she went up to her nana by the cashier lady she was chatting to and told her "we have to go...mommys legs hurt" and the cashier just laughed, or sorta giggled in a way. maybe thinking she was cute. my daughter, being the protective one of me she is, said "no-dont laugh. my mommy has fibromyalgia". i love my kid. okay-that was my fibro story i had to share.....
10-15-2008, 01:13 PM
Awww what a sweetie.
When I was young I didn't know that my mom had lupus. I'm not sure when she was diagnosed, but my sister and my brother both tell me that she knew and was under treatment.
I would do anything for my mom. I was always aware that she was in great pain, but she never stopped caring for us and doing for us. We helped out alot and were glad to do it.
You've got a dear little angel there.
I'm Rob, and I was diagnosed with Lupus in 2004. I can't add much from a technical standpoint as Susan and Kathy have already covered that pretty well. I can say that you have many of the symptoms that I have. Pleurisy, fatigue, mouth ulcers, joint pain, and the most frustating thing of all, having problems getting the right words to speak with. I do agree with Kathy that you meet the criteria for a diagnosis. A good rheumotologist is what you need now. And if anyone hints at doubting you on of all things, your tattoos, I'd turn around, walk away, and find someone else. Anyway, I just wanted to say hello, and welcome. Make yourself at home!
BTW- That's a great story about your daughter.
10-17-2008, 11:40 AM
thanks..i sometimes do feel like i do get judged because of my tatts, especially the last er visit, they just seemed to me that they wanted me out of their er ASAP. i do have another concern, and im not sure it is a lupus realted symptom, but you be the judge. during the summer, i went to the lake with my daughter and they have a sandy beach. i did lather myself with my daughters spf 50 all over my body. now-i have rarely rec'd sunburns throughout my life, in fact i always would get red for a day then it would turn into a nice golden brown tan. well, when i got home from the lake( i was out there for maybe 1 and a half hrs) my shin bone hurt. like really bad, and it was really red, like a rash. a pain more than a sunburn and it made me physically sick: tiredness, throbbing pain in the red area, throwing up. does this happen to lupus pts when you guys say sunlight exposure is bad? please let me know! im writing everything down for my doctor. my blood test results will be in monday. or should be.
10-17-2008, 12:37 PM
I just read your last post and it does sound like you are very sun sensitive. I too am extremely sun sensitive. The sun is causing you the pain and the nausea and vomiting. Do you also get a very bad headache and flu like symptoms from the sun? Sensitivity to the sun is very common with Lupus. I would bring this to the doctors attention big time.
10-17-2008, 02:15 PM
ive mainly always been sensitive to the heat more than the sun, but like i said-recently its also been the sun affecting my skin and they way i feel. i moved from texas to colorado to get out of the heat because it made me sick all the time! im not sure if its sun related, but i do get flu symptoms all the time, which could also be my fibromyalgia flaring. im so sick of this crap! what is worse is that i am a single mother and im so tired all the time- i feel im wasting my life away while my daughter needs my attention. my mom moved in with me in august this past year and has been helping alot with cleaning but i should be able to do this at 31! i work 8 hr days that kill me, but since im single with no hubby, it scares me to try and go on disability and not have stable income for a while until it goes through. i cant even walk more than 5 minutes without hurting most days.
10-20-2008, 10:26 PM
Starrval - I hope you got your results today, and I hope someone was able to tell you something real about what they might indicate. Any luck?
I know what you mean about feeling like you are missing out on giving your daughter the attention you wish you could give her. I have to take naps so often, and I am so tired (sometimes over-irritable) that I have missed out a lot with my kids also.
I decided to cut WAY back on everything I was doing besides work and home/kids. Even so, the house is a mess a lot. My kids don't care. They are more interested in having 10 minutes of my complete attention than eliminating dust bunnies.
Try not to hard on yourself. Give yourself credit for what you do get done every day and let the stuff you didn't get done worry about itself (the dirty counter is going anywhere, it will be waiting for you when you get around to it!)
I am impressed that you are able to actually work full time, with all of your symptoms. You need some serious recognition for that. You rock, little mama.
Regarding feeling like the Dr. wants you out of there ASAP... that may not be entirely from the tatts. My Dr. has taken to "fudging" how long it should take for labs to get back so he won't have to see me too soon. I'm a pain in his caboose because he doesn't know what to do with me. I want answers and he doesn't have any. I'm about as "normal"/average looking as they come. I actually don't think it's about us at all (even though somehow they manage to make us feel that way). I they need to get a stinkin' clue about how to deal with the fact that we might be difficult cases, but we are just people with feelings.
I was really interested in your experience and questions with sun sensitivity. I didn't know what that meant either - I thought it just meant your skin was prone to breaking out in a rash or something. I always get something like heat stroke now when I go out in the heat. Especially if I actually try to do some gardening, or something. Nausea, aching, dizziness, headache. Thank you so much for bringing this up. I'm amazed at how much I've learned on this forum.
And don't let anyone tell you that you don't have lupus just because one test came back negative. Seriously - there are so many false positives and false negatives that I start wondering how a Dr. ever makes a diagnosis at all. The guidelines say that you have to have four of the eleven criteria - but they don't all have to happen at the same time. My labs are all over the place - negative one time, positive another.
Short story long... this site is so comforting. Most people here share your experience of being treated poorly or like head cases at one time or another, and we all get that you just really need to be heard and taken care of by a good doctor.
Stay connected here. There's a lot of love and friendship going on in this place :)
10-21-2008, 08:23 AM
So I went to the ER Sunday night. Extreme headache on left side, numbness and tingling on left side of face. This was after I took my daughter to Fright Fest at Six Flags Saturday. I am wondering if this triggered something in me. I cant stand this bullcrap! I cant even do anything normal without getting so sick I go to the ER. I will not get my results until Wednesday, so I am still here...waiting.....I have also become very upset with my weight. I now hit the scales at 198. Last month i was 182. In January i was 178. the year before, i was 155. I am now officially fat. Fat fat fat! :(
10-21-2008, 08:38 AM
I feel your pain with the weight. Mine has creeped up also, but my knees hurt so bad, the thought of exercise or walking fills me with dread. I would love to do some kind of water exercise, but I don't know of anyplace around me that does it. If anyone has any ideas of ways to try to lose the weight and save me the pain in my knees, I would be most grateful.
10-21-2008, 02:18 PM
Holy Guacamole! Have you ever had anything like the tingling/numbness on the one side of your face before? Are you prone to migraines?
I had a similar thing happen to me in April. After four days of the face/scalp thing, I woke up from a nap to find my entire left side tingling. I went to the ER, stayed two days on stroke watch until the thing also affected my right side. As soon as it was both sides, they weren't as concerned about stroke - and all of my cardio/blood stuff came back good. They ended up calling it a "complicated migraine" which basically means the blood supply gets cut off to your brain because of constricted blood vessels. (stroke is blood supply getting cut off because of a clot - blood or cholesterol).
Here I am 6 months later, still wishing I understood what the heck went wrong. I don't trust my Dr.s at this point. I'm wondering if this is connected to lupus, because I believe that is when a gnarly flare started up for me.
Anyone else had something like this happen to them? The numbness/tingling?
Star - we might be living parallel lives here. I used to maintain about 155 weight without real effort. Now I'm up to 196 and I SWEAR I haven't changed my eating habits. (Thus ,my Ms. Piggy picture.)
I'm so sorry for your frustration, which is completely appropriate given the circumstances. I wish you were close by so I could just give you a big hug :!:
10-21-2008, 02:48 PM
2 months ago, I had a similar thing happen. I was at work and my left side went numb and tingly-exactly half, even the lips and tongue. All the same that I experienced but without the excruciating headache. I went to my doc immediately and they told me it was bells palsy-which was strange because i didnt have any facial drooping and it went away in 2 days. it did come back last week for an hour, then sunday it was so severe i didnt feel right at all, so i went to the ER. i am going to see another neurologist thursday, and my doctor called me back to get my rheumatologists info to consult withher for further treatment and she mentioned lupus again. that blood test should be back in tomorrow. watch-it will be negative like it was last time! maybe im one of those negative blood test lupus people!
10-21-2008, 03:11 PM
Let us know how you make out with your results.