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Old 04-15-2012, 05:50 PM   #1
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17 years old-could i have lupus?

Hey everyone,

IF YOU DON'T FEEL LIKE READING EVERYTHING, JUST READ WHAT IS BOLDED. I'm sorry. I'm new to this.

I've suffered from raynaud's-like symptoms my whole life and it has worsened-I was just diagnosed with raynaud's disease. My ANA tests is positive but really really low to the point where it's borderline positive/negative. I am always tired but I also am very capable of going and running two miles, no problem. I have headaches a lot, my aunt and my cousin have lupus. I have seen a rheum who isn't concern-just told me I have raynauds disease. My fatigue worsened and I went to see my pediatrician again. He told my mom to take me for a second opinion from a child's rheumy. She basically refused and begged for a mono test. My doc checked my spleen and by my eyes and everything and said it wasn't even possible for me to have mono. The test still came back positive, so right now I "have mono." I'm not exactly convinced, but my mom is. I've been tired for so long. so so long. And my head hurts so often. I get random pains here and there but I don't really complain much--except recently, my hands and my right arm hurt extremely bad which is what brought us back to the pediatrician. Anyone who has dealt with mono and lupus connections-misdiagnosis, etc--please give me insight. I had a urine test come back completely normal and great, and the rest of my blood counts are fine, so all my organs are supposedly working fine. But positive ANA, positive mono, raynaud's disease, aunt and cousin with lupus, and just not really feeling like myself--and I am so so tired all the time. But I never thought it was like "mono tired" where I couldn't get out of bed-cause it's not like that. Anyone? Thank you.



If you take the time to read this-thank you. If you take the time to reply to this with anything you may know or experiences you have-a double thanks.

I'm going to try to make this as short as I can---

Back in February my mom took me to my pediatrician. For my entire life I've had what people refer to as "red hands." We've always kind of ignored them, but the problem has gotten worse, so we decided it was time to pay the doc a visit to try to get answers. Aside from it worsening, my aunt and my cousin both have lupus, which made it more concerning.

My hands not only turn bright red but also turn purple and get very swollen and dark around the knuckles-they are hideous. But they also have started hurting. It is mostly in the cold. My doctor said it was likely nothing but he ran a blood test.
He tested for ANA's and for all my blood count levels-red, white, all of those. When the results came back I had ANA's present and slightly elevated-but borderline elevated/non-elevated. So they were very low. Other than that my blood count was fine and I was deemed perfectly healthy but my mom was told to make an appointment with the rheum. We explained my hands to the rheum and also explained that I have been EXTREMELY tired. Like to the max. I pass out. I nap all the time. It's pathetic. We explained this to him and he basically was like "okay, you need to get on a good sleeping schedule" (I'm a busy junior) "and you have raynaud's disease, but I'm not worried about the ANA's because they are so low. So yeah. see you in 6 months because of your family history."

So that was that. But my fatigue over the course of just a couple weeks got much worse and my hands started hurting so bad. My right arm had a shooting pain that had me laying on the couch like a bum. I also had a headache for four straight days. Then I noticed some swollen lymph nodes in my neck (not massive or anything, but I check everyday) and my mom was finally like "we're going back to the docs."
We went and she made an appointment for me to go in to get checked out the next day. She also got a copy of the bloodwork that had been done and like they said, all was well and my ANAs were there but they were low. At the docs the next day my mom brought up mono to my doc and he checked my spleen to see if it was swollen, checked by my tear duct, basically checked me out and said there was no chance I could have mono. He told my mom to take me to a child's rheum for a second opinion. My mom said check her for mono. He referred to it was "unnecessary *****ling and pinching" but agreed and also got a urine test.

My mono test came back positive. And my urine test was perfect. But my mom has stopped her quest to figure out what's wrong with me because of my mono. But I have felt this way for MONTHS. In fact, the past YEAR I've been passing out on a friend's couch on a friday night because I literally am so exhausted. It just has gotten really bad and interferes with my school work. I would believe the mono thing but my pediatrician was so convinced it wasn't, told my mom to take me for a second opinion for the lupus, and honestly, a month from now, I can't see myself feeling any different. I just want to feel like myself again, or I want answers. Both would be great. I've read people's accounts of being misdiagnosed with mono and actually having lupus. Could this be me?


Thank you if you read this and if you have any ideas or answers, please let me know.

 
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Old 04-16-2012, 03:54 AM   #2
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Re: 17 years old-could i have lupus?

Lotsoflaughs, you just took me back to my teenage years, and my sis, too. I'll try to convey a few points succinctly---but I hope you write back with more thoughts, questions, etc. Here goes.

Which test "proved" mono? Was it Epstein-Barr? Many people with lupus test off the charts. (I still did in my late 40's.)

Lupus has formal diagnostic criteria, which you can read in the "sticky posts" (permanent info posts) at the top of the thread list. You'll also find there a list of so-called "alternative criteria". Those are the most important lists you can read, as they define "Is it lupus?"

But beyond those formal criteria, lupus can bring on a vast range of signs and symptoms. For those, I recommend borrowing library books, to see how many things might describe you.

People can have systemic lupus WITHOUT major organ involvement. Therefore in my book, a normal urine test doesn't disprove lupus.

ANA is fuzzy because it's positive in numerous conditions, not just lupus; and worse, it can also be positive due to a passing virus (like mono) or to a family tendency. Therefore when ANA is positive and some lupus-like symptoms are present, rheumatologists usually run *more specific tests* to look for *more specific autoantibodies*. e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc. (There are a lot.) Were such *more specific tests* run?

BUT a tiny % of people with systemic lupus have a negative ANA, in a rare subset called Ro-lupus. These people do test positive for anti-Ro, an autoantibody seen in both SLE & Sjogren's syndrome. Such people are typically very photosensitive (UV rays bring on rashes &/or other symptoms).

My sis was dx'ed with mono at 15, with no other blood abnormalities. In contrast, I had elevated sed rate & depressed white blood count at age 13. My fatigue came & went & came back (etc.), while hers was basically solid & lasted roughly a year. (I wan't dx'ed with lupus until MANY years later.)

Re: headaches, were you tested for antiphospholipid syndrome? (There's a sticky post on it.) Testing positive for APS would add one "criteria".

Re: fatigue, were extra tests done to check on certain basic vitamin levels, like B and D, for example? While some of these can deplete in lupus, they also deplete for other reasons. In either event, depletion can cause fatigue.

Please know I'm just a patient, so whether this is the start of lupus, I couldn't say. But I sense you don't have enough "criteria" to support a lupus diagnosis---but there may be other useful tests that weren't done yet, so I hope you can get a few more done! And if new symptoms emerge, that should spur a new round of checkups & tests. But on the other hand, I imagine it's possible that mono is the cause. In other words, although I don't know (sorry!), I hope something here gives you ideas for further reading, questions, etc. I hope you post more soon. Sending my best, hugs, Vee

 
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Old 04-16-2012, 02:09 PM   #3
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Re: 17 years old-could i have lupus?

Thank you so much for replying, especially in such detail. Just a question-does your sister have lupus? You probably implied it or even outright said it and it went right over my head if she does-I understand that you do, though.

As far as the mono test goes-I actually don't know. When my doctor sends me to the lab at the medical group I go to (it has a group of pediatricians, a rheumetologist, dermatologist, and many other specialists along with the Quest Lab, it isn't just an independent practice) he basically just gives me a slip of paper with the tests ordered, I get the blood drawn at the Quest Lab somewhere else in the building, and the lab calls us and tells us the results-and they basically just said that I have mono. I'm sure many other places are like that-maybe all places are-but the only reason I say that is because, like I said, I have no idea what test it is and as far as I'm concerned the pediatrician I saw may have glanced at the results-that's about it-and he never talked to us about it. If he did take a good look at the results I'm sure he must have fallen over because he went on and on about how pointless the mono test would be. I go back at the beginning of May to see if I'm "better" and I can either ask then or have my mom pick up the paper.


I was never tested for any other specific things related to lupus/antibodies/etc. Basically when I went to the rheumetologist my ANA levels were so incredibly low that he could completely rule out lupus on the spot. In a way, I can see why-for starters, I don't look sick at all-when I'm tired I'm noticeably tired but honestly, everyone I meet can't get over how "vibrant" and "alive" and "glowing" I look all the time-so I mean there was no reason for him to look at me and say "gee, something is wrong with her" aside from my hands. I think that was the same thing my pediatrician must have thought especially after he checked my spleen and said it wasn't swollen at all, before I got tested for mono. But he just diagnosed me with raynaud's disease as I said before and he never even mentioned any other blood tests.

He blamed my fatigue on junior year, being a teenager, being busy-the norm. He has triplets my age, one of which is always tired, like me. He never said anything about mono, ever, which is why until I started feeling worse, I wasn't tested.

I was never tested for antiphospholipid syndrome. Compared to my fatigue, I can honestly say the headaches are the least of my worries because they usually don't interfere with my daily life. The period of time before I was tested for mono when I really started feeling bad, I had a period of four days where my headache would just not go away. A month or so beforehand, one day I got probably the worst headache I can ever remember having-tylenol & to bed it was. It only lasted a day though and I've never had really bad problems with headaches and I never get what people call "migraines"---I wouldn't even know what hit me because I've thankfully never experienced one. But I have what I consider a "headache" everyday and especially when I'm feeling kind of tired- you know the- I guess joints-under your ear, behind your jaw, I suppose connecting your neck to your skull (probably completely inaccurate, shows how much I really know about the human body)-around that area and around the back of my neck/lower head (still probably making no sense) I can a headache and occasionally running up the sides of my head (REALLY making no sense now-I'm sorry) but usually it's like a neck/headache. I rarely get those throbbing, terrible, put you to sleep headaches, it's really for the most part a persistent mild one.

I'm not really sensitive to light or anything. I'm very Irish, I have very pale skin, I'm freckly and used to having redness in my skin. People always thought my mom put blush on me as a baby because my cheeks were so red, but that really is just my complexion. I burn very easily (I was deemed a living lobster girl at a fair when I was 12). I would say my skin reddens in the sun sometimes even if I'm not getting severely burned but any red patches on my skin or anything like that I honestly believe has to be just my complexion and small reactions to anything-kinds of materials, you know. When I explained my raynaud's to my boyfriend's mom she thought it was running up my arm (only the part above my elbow) but then she realize it was just my complexion-if that gives you any idea of my complexion (but it definitely was not as red or purple as my hands). My skin is full of flaws and red and often bruises (I bruise ridiculously easily and sometimes pretty bad, so I mean, I'm just a million different colors).


I did read on the sticky notes "severe reactions to bug bites"-that may be an understatement. For me a little mosquito bite turns into a golf ball, sometimes larger. Over the past month I have no idea what bit me, but I got bitten on my right wrist and it was itchy but not awful-yet it swelled up pretty bad and now my skin in that specific spot is very dry. It's kind of weird. It was there for about two weeks. The same thing happened on my left elbow this past week and it's still there and is like a dry patch of skin. The one on my wrist was pretty miserable and this one on my elbow isn't great but i don't know if thats anything really to worry about.
Thank you again for your reply. At this point I think the only thing I can really do is wait to go back to the pediatrician and see if this mono thing has run its course and they deem me "better." I'm only going to be more skeptical if I'm not "better" and haven't started feeling like myself again my spleen is still not swollen (not that I want it to swell) and my blood test still says I have mono, because like I said this has been going on for the past year-this is just the absolute worst it has been. Don't get me wrong, I would love to take the mono diagnosis and I most definitely don't want to have lupus- I've had numerous people in my life aside from family suffer from it and I'm really not trying to blow my situation out of proportion because aside from everything I've described to you, I'm very healthy and very lively and very happy. My rheumetologist, although he did take my hands seriously, diagnosed me-I just felt was very caught up in the whole "junior year" syndrome thing when it came to me not feeling like myself and being tired all the time. I know I should trust my doctors to know what's best but it's very difficult for me to believe I can do that-what my doctor blew off as fatigue got worse so quickly- and turned out to be mono-which my pediatrician also, in my opinion, blew off. If my mom had not been like "test her even though you don't think she has it. just test her." We would have never known. And feeling this way for so long is just very, very frustrating.

Last edited by lotsoflaughs11; 04-16-2012 at 02:21 PM.

 
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Old 04-16-2012, 02:40 PM   #4
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Re: 17 years old-could i have lupus?

Hi. My sister has hypothyroidism & asthma, dxed in mid-life. I have lupus. My mom probably had antiphospholipid syndrome (she took Coumadin for decades) & I think she may have had SLE, as well, from what I know now. (She's deceased.) We also have Crohn's & ulcerative colitis in the family.

While waiting to see how this sorts out, you could get copies of your bloodwork---look at everything, including extra tests (vitamin levels, etc.). You could also read about lupus & see how many things ring bells with you. Also, you could look into other rheumatologists, in case you need to see a new one at some point. (I finally went to a rheumatologist affiliated with a teaching hospital, and that did it: he ran circles around my suburban drs.)

Are your bruises really bruises? People with lupus can get purplish discoloration called purpura, which look like bruises but aren't, really.

I just read that mono can cause your spleen to swell, and that patients are sometimes told to limit strenuous activity, to reduce risk of rupture. Also, that some anemias are possible---so maybe you could ask more questions re: what blood tests were done? (Anemia alone can knock you flat, even without mono or anything else going on.)

Yes, it's totally discouraging when you're told you look fine, yet you feel awful. Hang in there & let us know how you're doing. We're always here when you need us. All my best, Vee

Last edited by VeeJ; 04-16-2012 at 02:51 PM. Reason: correction

 
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Old 04-20-2012, 10:30 PM   #5
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Re: 17 years old-could i have lupus?

hi the only way i could reply to this was if i quoted what you wrote. to me it sounds like you hsve lupus but you say you aunt has it, but i am under the impression that lupus skips a generation. i could be wronge, but yhere is this thing rumitoyed artheritis (that is probably spelled wronge sorry) that test positive and negative the same way lupus does and it is the same test. that also sounds like something you could have. im sorry if that wasnt much help :/ but you should ask your doctor about it.

IF YOU DON'T FEEL LIKE READING EVERYTHING, JUST READ WHAT IS BOLDED. I'm sorry. I'm new to this.

I've suffered from raynaud's-like symptoms my whole life and it has worsened-I was just diagnosed with raynaud's disease. My ANA tests is positive but really really low to the point where it's borderline positive/negative. I am always tired but I also am very capable of going and running two miles, no problem. I have headaches a lot, my aunt and my cousin have lupus. I have seen a rheum who isn't concern-just told me I have raynauds disease. My fatigue worsened and I went to see my pediatrician again. He told my mom to take me for a second opinion from a child's rheumy. She basically refused and begged for a mono test. My doc checked my spleen and by my eyes and everything and said it wasn't even possible for me to have mono. The test still came back positive, so right now I "have mono." I'm not exactly convinced, but my mom is. I've been tired for so long. so so long. And my head hurts so often. I get random pains here and there but I don't really complain much--except recently, my hands and my right arm hurt extremely bad which is what brought us back to the pediatrician. Anyone who has dealt with mono and lupus connections-misdiagnosis, etc--please give me insight. I had a urine test come back completely normal and great, and the rest of my blood counts are fine, so all my organs are supposedly working fine. But positive ANA, positive mono, raynaud's disease, aunt and cousin with lupus, and just not really feeling like myself--and I am so so tired all the time. But I never thought it was like "mono tired" where I couldn't get out of bed-cause it's not like that. Anyone? Thank you.



If you take the time to read this-thank you. If you take the time to reply to this with anything you may know or experiences you have-a double thanks.

I'm going to try to make this as short as I can---

Back in February my mom took me to my pediatrician. For my entire life I've had what people refer to as "red hands." We've always kind of ignored them, but the problem has gotten worse, so we decided it was time to pay the doc a visit to try to get answers. Aside from it worsening, my aunt and my cousin both have lupus, which made it more concerning.

My hands not only turn bright red but also turn purple and get very swollen and dark around the knuckles-they are hideous. But they also have started hurting. It is mostly in the cold. My doctor said it was likely nothing but he ran a blood test.
He tested for ANA's and for all my blood count levels-red, white, all of those. When the results came back I had ANA's present and slightly elevated-but borderline elevated/non-elevated. So they were very low. Other than that my blood count was fine and I was deemed perfectly healthy but my mom was told to make an appointment with the rheum. We explained my hands to the rheum and also explained that I have been EXTREMELY tired. Like to the max. I pass out. I nap all the time. It's pathetic. We explained this to him and he basically was like "okay, you need to get on a good sleeping schedule" (I'm a busy junior) "and you have raynaud's disease, but I'm not worried about the ANA's because they are so low. So yeah. see you in 6 months because of your family history."

So that was that. But my fatigue over the course of just a couple weeks got much worse and my hands started hurting so bad. My right arm had a shooting pain that had me laying on the couch like a bum. I also had a headache for four straight days. Then I noticed some swollen lymph nodes in my neck (not massive or anything, but I check everyday) and my mom was finally like "we're going back to the docs."
We went and she made an appointment for me to go in to get checked out the next day. She also got a copy of the bloodwork that had been done and like they said, all was well and my ANAs were there but they were low. At the docs the next day my mom brought up mono to my doc and he checked my spleen to see if it was swollen, checked by my tear duct, basically checked me out and said there was no chance I could have mono. He told my mom to take me to a child's rheum for a second opinion. My mom said check her for mono. He referred to it was "unnecessary *****ling and pinching" but agreed and also got a urine test.

My mono test came back positive. And my urine test was perfect. But my mom has stopped her quest to figure out what's wrong with me because of my mono. But I have felt this way for MONTHS. In fact, the past YEAR I've been passing out on a friend's couch on a friday night because I literally am so exhausted. It just has gotten really bad and interferes with my school work. I would believe the mono thing but my pediatrician was so convinced it wasn't, told my mom to take me for a second opinion for the lupus, and honestly, a month from now, I can't see myself feeling any different. I just want to feel like myself again, or I want answers. Both would be great. I've read people's accounts of being misdiagnosed with mono and actually having lupus. Could this be me?


Thank you if you read this and if you have any ideas or answers, please let me know.[/QUOTE]

 
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Old 04-24-2012, 05:09 PM   #6
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Re: 17 years old-could i have lupus?

yes my mom's sister has it and so does her son. my rheumatologist didn't say anything about it skipping a generation but i guess it is possible that it does.

 
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