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....
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?
Jules I am so sorry, I really didn't mean to hijack your thread, I saw you posted and I should haver never said anything outloud about anything other than what your original question was.
Now because I've pissed someone off in the heart disease forum I'm being sent messages by a moderator there telling me not to post questions in others posts even if it furthers the topic on hand, so again I apologize and didn't mean to take over your thread with my whining and complaining.
For any others who have read this, forgive me and I apologize for interrupting so rudely into another person's post.
Now because I've pissed someone off in the heart disease forum I'm being sent messages by a moderator there telling me not to post questions in others posts even if it furthers the topic on hand, so again I apologize and didn't mean to take over your thread with my whining and complaining.
For any others who have read this, forgive me and I apologize for interrupting so rudely into another person's post.
oopsss that should be edited to say I've Ticked someone off - I didn't know the word I used was a bad word, I've seen other post it and it was not censored!
To jsuter69 & Lisa33167
JSUTER69 - Honestly, some of your symptoms I can confir with. Gastro problems and heart palpatations. The best advice I got that helped me get a quicker diagnosis was to SPEND TIME IN THE SUN PRIOR TO GETTING YOUR ANA CHECKED. What this does, if you have lupus, it will cause an autoimmune response to occur, thus causing the ANA to be more elevated. If it remains at that low level, chances are you won't get anywhere w/ the dr. (just a piece of advice) I also encourage you to get your vit D level checked.
LISA33167 - I'm not sure what all you are going through. You know quit a bit about lupus and ANA levels. Thanks so much for your contribution. I'm not sure what you were talking about, but I too have had someone get sideways with me and (even though it made me feel crummy, I bit my lip and said nothing) I truely didn't mean any harm. But one thing I've found is that many of us here are very sick. And many times sick people have short fuses. For me, being extremely sick made me very humble and appreciative. My husband and kids were absolutely awesome. I don't know what would've come of me w/o them. But there might be some who are all alone (eiether physically or mentally). It gives us an opportunity to love and pray for them in the midst of their trial. You sound like a very loving and caring person. God bless you for what you do.
JULIE - keep us posted on your outcome. We are all here for you.
JSUTER69 - Honestly, some of your symptoms I can confir with. Gastro problems and heart palpatations. The best advice I got that helped me get a quicker diagnosis was to SPEND TIME IN THE SUN PRIOR TO GETTING YOUR ANA CHECKED. What this does, if you have lupus, it will cause an autoimmune response to occur, thus causing the ANA to be more elevated. If it remains at that low level, chances are you won't get anywhere w/ the dr. (just a piece of advice) I also encourage you to get your vit D level checked.
LISA33167 - I'm not sure what all you are going through. You know quit a bit about lupus and ANA levels. Thanks so much for your contribution. I'm not sure what you were talking about, but I too have had someone get sideways with me and (even though it made me feel crummy, I bit my lip and said nothing) I truely didn't mean any harm. But one thing I've found is that many of us here are very sick. And many times sick people have short fuses. For me, being extremely sick made me very humble and appreciative. My husband and kids were absolutely awesome. I don't know what would've come of me w/o them. But there might be some who are all alone (eiether physically or mentally). It gives us an opportunity to love and pray for them in the midst of their trial. You sound like a very loving and caring person. God bless you for what you do.
JULIE - keep us posted on your outcome. We are all here for you.
You are really going through a lot.
Of coarse it "could" be lupus. Lupus can cause problems in any area of the body. But I'm not sure it would cause the white spots on the brain. I feel like the psychologist is for the anxiety that you are experiencing because you are so sick. I too felt very anxious, but when the symptoms settled down, so did I. You definitely have something going on. I'm glad your dr. is sending you to a neurologist and an oncologist. Just to get some things ruled out. Many times, docs just eleminate possibilities in order to arrive at a diagnosis. Please keep us posted.
Dr. Nicholsen will be ansering question 2/7. Go ahead and try submitting your question to him. Everytime we have him on I have to learn how to submit a question all over again. I'll try to look into that and get back with you.
I'm so sorry for all that you are going through. I remember not having the strength to do any research much less the "brain" to think it all through. I know God carried me through those difficult years. Sweetie, I'm praying for you.
Of coarse it "could" be lupus. Lupus can cause problems in any area of the body. But I'm not sure it would cause the white spots on the brain. I feel like the psychologist is for the anxiety that you are experiencing because you are so sick. I too felt very anxious, but when the symptoms settled down, so did I. You definitely have something going on. I'm glad your dr. is sending you to a neurologist and an oncologist. Just to get some things ruled out. Many times, docs just eleminate possibilities in order to arrive at a diagnosis. Please keep us posted.
Dr. Nicholsen will be ansering question 2/7. Go ahead and try submitting your question to him. Everytime we have him on I have to learn how to submit a question all over again. I'll try to look into that and get back with you.
I'm so sorry for all that you are going through. I remember not having the strength to do any research much less the "brain" to think it all through. I know God carried me through those difficult years. Sweetie, I'm praying for you.
Karajo thanks =) I've done alot of personal research on SLE. I posted here last year because my neurologist thought I had SLE but my ANA was negative even though I have alot of the symptoms...but I have symptoms from various diseases and still trying to find out what's wrong and trying to help others find out what's wrong with them.
I didn't want my posts to Jules get deleted or someone think I was hijacking her thread as I was accused of in another forum. I was told we aren't allowed to ask questions in another person's thread or "hijack" it for lack of proper terms; even asking a question if it pertains to the particular matter at hand, so I apologized to her for doing this. if I hijacked any thread in the past 2 years it's probably this one and i feel horrible!
I was told that if I have a question or it goes off topic to send a PM to that person I'm talking to - and I went way off topic with Jules thread and I felt bad because I know how much she's been going through and trying to find answers like me.
It's just so frustrating watching someone use power for their own purpose, that's what bothers me the most I think and why I flew off the handle. I try never to degrade others and never put anyone down or make them feel bad. Someone did this to me and thought it was OK and then used their friendship with a community leader against me. I am so frustrated on top of being sick it's hard to deal with.
I pm'd this person asking why attack me and try to make me look bad when I have never done anything to anyone and there are others out there who deal with a lot less and "whine" about it? Yes I used the word whine...sorry [crawls in a hole] I was really offended that they tried to embarrass me in a forum.
They took my PM and posted it in the middle of a thread, so I didn't take kindly to my private post being public. This person tried to embarrass and humiliate me in public and others pm'd me to let me know they had been done the same way by the same person.
Jules if I get banned I will be back with another name and I will behave and send you a message - you've been a great friend and I should have never posted my hostility in your thread, sorry :(
I didn't want my posts to Jules get deleted or someone think I was hijacking her thread as I was accused of in another forum. I was told we aren't allowed to ask questions in another person's thread or "hijack" it for lack of proper terms; even asking a question if it pertains to the particular matter at hand, so I apologized to her for doing this. if I hijacked any thread in the past 2 years it's probably this one and i feel horrible!
I was told that if I have a question or it goes off topic to send a PM to that person I'm talking to - and I went way off topic with Jules thread and I felt bad because I know how much she's been going through and trying to find answers like me.
It's just so frustrating watching someone use power for their own purpose, that's what bothers me the most I think and why I flew off the handle. I try never to degrade others and never put anyone down or make them feel bad. Someone did this to me and thought it was OK and then used their friendship with a community leader against me. I am so frustrated on top of being sick it's hard to deal with.
I pm'd this person asking why attack me and try to make me look bad when I have never done anything to anyone and there are others out there who deal with a lot less and "whine" about it? Yes I used the word whine...sorry [crawls in a hole] I was really offended that they tried to embarrass me in a forum.
They took my PM and posted it in the middle of a thread, so I didn't take kindly to my private post being public. This person tried to embarrass and humiliate me in public and others pm'd me to let me know they had been done the same way by the same person.
Jules if I get banned I will be back with another name and I will behave and send you a message - you've been a great friend and I should have never posted my hostility in your thread, sorry :(
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