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Hey everyone,

[B]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. [/B]


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 prickling 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.
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.

[B]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. [/B]


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 prickling 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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