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.
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!
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.
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?
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?
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.