Aa
CAN SOMEBODY PLEASE HELP ME, I'M SCARED!!
I just recently had some lab work done, my ANA came back and my ANA-Titer came back as 1:80...I talked to a lab tech from the hospital and he said my lab work sounds like Lupus...I'm really scared & I just want to break down and cry...
Here's my symptoms
1) Back and leg pain
2) Digestive problems
3) Headaches
4) Hematuria( but the crazy thing is, I've seen a urologist, orthopedic surgeon and a CT Scan and all of these tests came back good...I just don't get it...
Please help me....
Here's my symptoms
1) Back and leg pain
2) Digestive problems
3) Headaches
4) Hematuria( but the crazy thing is, I've seen a urologist, orthopedic surgeon and a CT Scan and all of these tests came back good...I just don't get it...
Please help me....
Jules, I'm just so glad you're finally finding some answers and doctor listened to you. Being told it's all in your head is frustrating and too many of us have been there. I love you too girl, you've been there for me as a friend for almost 2 years and I hope I've returned the favor even in my self centered search for answers hehehe
As far as I know and have read Homogeneous is a common ana pattern in SLE (lupus) BUT also found in infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease so it's important for them to find out why you have it.
keep pushing and find the right dr, I'm sure someone who's been through this can direct you to which type of dr you need to start with (rheumagologist, endocrinologist etc)
start a list, go back and find any records you have and make notes, dates symptoms etc to take to the dr with you so you have something to show them and narrow the search down =)
As far as I know and have read Homogeneous is a common ana pattern in SLE (lupus) BUT also found in infections, cancer, lung diseases, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, and in elderly people or people with a family history of rheumatic disease so it's important for them to find out why you have it.
keep pushing and find the right dr, I'm sure someone who's been through this can direct you to which type of dr you need to start with (rheumagologist, endocrinologist etc)
start a list, go back and find any records you have and make notes, dates symptoms etc to take to the dr with you so you have something to show them and narrow the search down =)
Hey! I just got home from work! And of course my heart palps start acting up, glad they waited until I got in bed and got all relaxed...lol!
And yes, you've always been here for me too! You are my very dear friend...it's strange how I tell you and a few others, like Jodie, every little thing that's going on and I feel so close to you, even though we have never met...probably closer than some of my own family members...
And your search for answers, is not self centered..lol..believe it or not, you probably help dozens of people everyday, especially me! I read almost everything you write...seriously, I look up to you, you are a strong woman and I respect you deeply...
I will keep fighting...in fact I'm calling the clinic where my appt's supposed to be and see if there's any way I can get in sooner...
I think what scared me the most was the nurse I spoke to last night...she said that SLE would explain all the symptoms I have and always complain about...my heart palps, digestive issues, like my gas pains and stomach cramping and my sinus/tension headaches...it's mostly my gas/cramping pains, not happy until I...uh....fart...lol..(TMI) but that's my night in a nutshell...lol!
I will definitely start keeping a journal...apparently I got til June,16th to get it all in order, you know, I bet if it was their family member needing to be seen, there'd be no 6 month wait!?!
Jules
And yes, you've always been here for me too! You are my very dear friend...it's strange how I tell you and a few others, like Jodie, every little thing that's going on and I feel so close to you, even though we have never met...probably closer than some of my own family members...
And your search for answers, is not self centered..lol..believe it or not, you probably help dozens of people everyday, especially me! I read almost everything you write...seriously, I look up to you, you are a strong woman and I respect you deeply...
I will keep fighting...in fact I'm calling the clinic where my appt's supposed to be and see if there's any way I can get in sooner...
I think what scared me the most was the nurse I spoke to last night...she said that SLE would explain all the symptoms I have and always complain about...my heart palps, digestive issues, like my gas pains and stomach cramping and my sinus/tension headaches...it's mostly my gas/cramping pains, not happy until I...uh....fart...lol..(TMI) but that's my night in a nutshell...lol!
I will definitely start keeping a journal...apparently I got til June,16th to get it all in order, you know, I bet if it was their family member needing to be seen, there'd be no 6 month wait!?!
Jules
thanks Jules...that means alot; I really needed that right now...sometimes I feel closer to people I've never met also - no one understands what I'm going through and I don't like to say a whole lot to family/friends - my thoughts get all jumbled and I can't "proof read" everything I say in person! hehehe
I was put down by someone in the heart disease forum ugh LOL I should know how people are and just shrug it off... people read into things that aren't written or read things wrong or heck I meant what I said completely different than it came out...I replied to a thread that I had 'suffered' 50,000 pvc's and thought the response was well thought out and good for others to know that you can survive even with TONS of pvc's, heart muscle disease, heart failure, all kinds of whacko stuff dr's dont know but think are AI going on and I get told it's about my "attitude" ??? me? lol I just wanted to laugh, but I couldn't...
I use helping others as a therapy not only for me, but for others to make sure people know you're not the only one going through it and realize no matter what is going on with me there is always someone out there who is "suffering" or going through something worse than what we are and I get dogged...in a few days when my hormones are even; I'll laugh off her comment and "recommendations' for my attitude! lol
btw you still should check on dysautonomia issues also; AI & ANS can be lap over into each other and explain some of what you've been going through =)
I was put down by someone in the heart disease forum ugh LOL I should know how people are and just shrug it off... people read into things that aren't written or read things wrong or heck I meant what I said completely different than it came out...I replied to a thread that I had 'suffered' 50,000 pvc's and thought the response was well thought out and good for others to know that you can survive even with TONS of pvc's, heart muscle disease, heart failure, all kinds of whacko stuff dr's dont know but think are AI going on and I get told it's about my "attitude" ??? me? lol I just wanted to laugh, but I couldn't...
I use helping others as a therapy not only for me, but for others to make sure people know you're not the only one going through it and realize no matter what is going on with me there is always someone out there who is "suffering" or going through something worse than what we are and I get dogged...in a few days when my hormones are even; I'll laugh off her comment and "recommendations' for my attitude! lol
btw you still should check on dysautonomia issues also; AI & ANS can be lap over into each other and explain some of what you've been going through =)
I'm so sorry anybody would misinterpret anything you had to say...seriously?! You have THE best sense of humor and I have NEVER once been offended by anything you have ever said...and I'm just being honest!
And this forum is for "self expression", not for literal interpretation of a medical condition, we use this forum to confide and express our concerns, apprehensions and worries...and in return we "hope" somebody is good enough to respond to our anxiety's!
And I totally agree with you, this IS a type of therapy...that's why I come on here, for the SAME exact reasons, so I don't feel alone! Well...let me at her...lol...I've seen people get on the Heart Rhythm forum going at it before...it's nuts, some people I swear, it's like they use these sites for THEIR anger and aggression issues...it's like, "Okay, looney tunes, whatever you say"...lol...it's just another release for their inner rage and hostility, and the FIRST person that "sounds" edgy or smart gets to carry their wrath...believe me, they are the one with the problem...NOT YOU! Anybody should feel lucky when you respond...I know, that's how I feel...it may sound cheesy but it's true..you're very intelligent and who gives a crap if you come across as otherwise...your friends on here, know the truth!
Btw....what is AI? I'm sure I've read about it but right now, my minds a blank..lol...and you said something about overlapping? Can you explain this further? Sorry...
YOUR buddy,
Jules
And this forum is for "self expression", not for literal interpretation of a medical condition, we use this forum to confide and express our concerns, apprehensions and worries...and in return we "hope" somebody is good enough to respond to our anxiety's!
And I totally agree with you, this IS a type of therapy...that's why I come on here, for the SAME exact reasons, so I don't feel alone! Well...let me at her...lol...I've seen people get on the Heart Rhythm forum going at it before...it's nuts, some people I swear, it's like they use these sites for THEIR anger and aggression issues...it's like, "Okay, looney tunes, whatever you say"...lol...it's just another release for their inner rage and hostility, and the FIRST person that "sounds" edgy or smart gets to carry their wrath...believe me, they are the one with the problem...NOT YOU! Anybody should feel lucky when you respond...I know, that's how I feel...it may sound cheesy but it's true..you're very intelligent and who gives a crap if you come across as otherwise...your friends on here, know the truth!
Btw....what is AI? I'm sure I've read about it but right now, my minds a blank..lol...and you said something about overlapping? Can you explain this further? Sorry...
YOUR buddy,
Jules
oh jules I laughed hard at looney tunes lol thanks =)
I got a few messages about this person and know I'm not the only one and anyone who takes a personal message, picks it apart for their response instead of just posting the entire thing or replying to the PM has issues...wow
AI is autoimmune and I don't want to hijack your thread :P I'll send you a note or pm, you need to get your questions answered.
Sometimes conditions in overlap; some will have symptoms and will mimic others - like in the AI diseases, some of us will have dysautonomia things and one dr will only focus on that or say you have symptoms of Lupus and a dr will only focus on that one thing but they can all overlap and we really have both.
I got a few messages about this person and know I'm not the only one and anyone who takes a personal message, picks it apart for their response instead of just posting the entire thing or replying to the PM has issues...wow
AI is autoimmune and I don't want to hijack your thread :P I'll send you a note or pm, you need to get your questions answered.
Sometimes conditions in overlap; some will have symptoms and will mimic others - like in the AI diseases, some of us will have dysautonomia things and one dr will only focus on that or say you have symptoms of Lupus and a dr will only focus on that one thing but they can all overlap and we really have both.
Please read and write back with any conclusions or feedback that might lead me in the right direction or give me any advice or thoughts of where I go from here..I'm willing to try anything!
So i was reading your test results and symptoms from your initial post and had some ? For ya! I was around 7 yrs old when I started w symptoms like joint pain of which the Drs insisted was growing pains. When I was 11 I started having severe stomach pain. They did 4 lap surgeries and found 2L of bloody fluid but couldn't tell me what it was from. They then decided that epidurals were the best treatment option because I was on such severe pain. I have had a high (+) ANA but have not gotten a raised rash, although I do get red in the face often when in the sun (but it is not a sunburn). The drs have gone back and forth between lupus or not lupus. In 2008 Drs found a mass in my neck and removed 5-7 inflamed lymph nodes along with the mass which had been on one of the lymph nodes. That year, I also developed left flank pain. They did several blood tests and the only new symptom was that I had elevated Eosinophils (EOS's) after seeing nephrologist after nephrologist I was finally able to get a urologist to performe a bladder scope and he discovered red raised "bumps/freckle like/hives all over my bladder leading to my kidney. He took biopsys and sent them to his colleagues all over the US and like my urologist, no one had ever seen them. After getting no answers to what the bumps in my bladder were, I was told by another nephrologist that I had "loin pain hemeturia syndrome" (which after doing research I discovered that it just means kidney/flank pain and Drs often use this dx as a cop out dx when they don't know what else it could be). The joint pain has been persistent over the years and has become more severe especially since I moved from Arizona to Utah. They have me on pain medication to try to help me function while going to school but it doesn't give me the relief I hoped for. This past Sept (2010) I began having heart palpitations and a heart rate of 186-190 when these occurred. I was hospitalized and let go after they calmed down. In Oct I began having a lot worse memory loss than normal (although my memory has alllways seemed to be far from "normal" as Drs have stated). I was also having blurred vision and confusion. I began to say the wrong words while thinking I was making sense (specific example : "pass the pencil please" instead of "pass the salt please"). Once hospitalized, they ran tests including ct w and wo contrast, mri's, X-rays, ect and came to the conclusion that I had two white spots in my right frontal lobe. I was then sent to a neurologist and oncologist. About a week ago, I was told I had an iron level of 12 when supposed to be between 90-150ish. I was reading how you had been told it was anxiety and it blew my mind because not even a week ago a Dr referred me to see a psychologist for support. Although I was looking for support, I was told it was from "anxiety".
1: Has anyone ever heard of someone or even had similar symptoms or do you have any insight, advice, or even treatments I could try since I'm not receiving treatment from Drs?? I'm at my breaking point and will truly try anything. Also, by any chance has anyone ever heard of white spots on a brain being caused by anxiety?
So i was reading your test results and symptoms from your initial post and had some ? For ya! I was around 7 yrs old when I started w symptoms like joint pain of which the Drs insisted was growing pains. When I was 11 I started having severe stomach pain. They did 4 lap surgeries and found 2L of bloody fluid but couldn't tell me what it was from. They then decided that epidurals were the best treatment option because I was on such severe pain. I have had a high (+) ANA but have not gotten a raised rash, although I do get red in the face often when in the sun (but it is not a sunburn). The drs have gone back and forth between lupus or not lupus. In 2008 Drs found a mass in my neck and removed 5-7 inflamed lymph nodes along with the mass which had been on one of the lymph nodes. That year, I also developed left flank pain. They did several blood tests and the only new symptom was that I had elevated Eosinophils (EOS's) after seeing nephrologist after nephrologist I was finally able to get a urologist to performe a bladder scope and he discovered red raised "bumps/freckle like/hives all over my bladder leading to my kidney. He took biopsys and sent them to his colleagues all over the US and like my urologist, no one had ever seen them. After getting no answers to what the bumps in my bladder were, I was told by another nephrologist that I had "loin pain hemeturia syndrome" (which after doing research I discovered that it just means kidney/flank pain and Drs often use this dx as a cop out dx when they don't know what else it could be). The joint pain has been persistent over the years and has become more severe especially since I moved from Arizona to Utah. They have me on pain medication to try to help me function while going to school but it doesn't give me the relief I hoped for. This past Sept (2010) I began having heart palpitations and a heart rate of 186-190 when these occurred. I was hospitalized and let go after they calmed down. In Oct I began having a lot worse memory loss than normal (although my memory has alllways seemed to be far from "normal" as Drs have stated). I was also having blurred vision and confusion. I began to say the wrong words while thinking I was making sense (specific example : "pass the pencil please" instead of "pass the salt please"). Once hospitalized, they ran tests including ct w and wo contrast, mri's, X-rays, ect and came to the conclusion that I had two white spots in my right frontal lobe. I was then sent to a neurologist and oncologist. About a week ago, I was told I had an iron level of 12 when supposed to be between 90-150ish. I was reading how you had been told it was anxiety and it blew my mind because not even a week ago a Dr referred me to see a psychologist for support. Although I was looking for support, I was told it was from "anxiety".
1: Has anyone ever heard of someone or even had similar symptoms or do you have any insight, advice, or even treatments I could try since I'm not receiving treatment from Drs?? I'm at my breaking point and will truly try anything. Also, by any chance has anyone ever heard of white spots on a brain being caused by anxiety?
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