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, did it say ANA pattern? such as Homogeneous; Peripheral; Speckled; Nucleolar?
Hopefully someone else will let you know to calm your nerves some...but from what I've read when I started searching - the test is something like this:
1:10 positive
1:20 positive
1:40 positive
1:80 positive [your result]
1:160 positive
1:320 negative
now maybe they'll listen and stop the 'it's all anxiety' and give you some help =) hang in there
Hopefully someone else will let you know to calm your nerves some...but from what I've read when I started searching - the test is something like this:
1:10 positive
1:20 positive
1:40 positive
1:80 positive [your result]
1:160 positive
1:320 negative
now maybe they'll listen and stop the 'it's all anxiety' and give you some help =) hang in there
1 Comments
That's incorrect. The above is an example of the steps a lab takes in evaluating. They diluted a blood sample at those ratios (starting at the top, 1:10) and then tested for antibodies. The last result with visible antibodies is reported as your number. In the above example, the patient's number would be 1:160.
I'm suprised a lab tech would even voice an opinion to you since hospital workers have been essentially gagged regarding expressing any opinion on test results - be they radiology techs, nurses, or lab techs. You got lucky that one risked doing so.
I'm currently with progressing symptoms and no diagnosis, no real leads on what is causing them except that I react to UV rays, so in a way I'm envious of you actually being close to diagnosis.
On the other hand, I can understand that the idea of having lupus could be scary to you. My suggestion: Find your local lupus support group and connect with them right away. They can help put your mind more at ease by providing much-needed information to you about what lupus involves, how to manage it, and about understanding lupus test results.
I can so relate to Lisa33167's comment about "now maybe they'll listen and stop the 'it's all anxiety nonsense' and give you some help."
Lisa, boy have I heard your above quote far too often from doctors. It's their pat response when they either can't find the real answer, don't care to try to find the real answer, know the answer, but are not willing to give you the diagnosis, or think they have some God-given power to see into our psyches. My symptoms are real, they are not of psychogenic origin!
I'm hoping this is the last disease support website I will ever have to frequent - that I finally will get my answer!!
Meanwhile, good luck, jsuter! Connect with your local lupus support group (even if you are not officially diagnosed yet) with your concerns. They can help!
WAF
I'm currently with progressing symptoms and no diagnosis, no real leads on what is causing them except that I react to UV rays, so in a way I'm envious of you actually being close to diagnosis.
On the other hand, I can understand that the idea of having lupus could be scary to you. My suggestion: Find your local lupus support group and connect with them right away. They can help put your mind more at ease by providing much-needed information to you about what lupus involves, how to manage it, and about understanding lupus test results.
I can so relate to Lisa33167's comment about "now maybe they'll listen and stop the 'it's all anxiety nonsense' and give you some help."
Lisa, boy have I heard your above quote far too often from doctors. It's their pat response when they either can't find the real answer, don't care to try to find the real answer, know the answer, but are not willing to give you the diagnosis, or think they have some God-given power to see into our psyches. My symptoms are real, they are not of psychogenic origin!
I'm hoping this is the last disease support website I will ever have to frequent - that I finally will get my answer!!
Meanwhile, good luck, jsuter! Connect with your local lupus support group (even if you are not officially diagnosed yet) with your concerns. They can help!
WAF
Hi Julie, so sorry to hear about what you are going through. For one thing, even though your ANA was "positive" it is not very elevated. Even when mine was 1:320, they didn't get fuzzed out. It wasn't until I spent time in the sun prior to my ANA being checked and it came back 1:2,560 that they took note. Along w/ 5 out of the 11 symptom criteria for Lupus.
There are 11 criteria for a lupus dx. You must have at least 4 of the 11 to recieve a dx.
They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test
Other symptoms are:
fever (90-95%)
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few
Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.
Autoimmune diseases can be very difficult to dx and usually takes years for dr. to put all the puzzle pieces together. The reason is, not all of the symptoms happen at the same time. They come and go too. I can feel like there is nothing wrong with me one day and the next feel like I'm dieing. The #1 symptom of lupus is severe joint pain, usually in the knees.
You need to also ask your dr to check you vit D level. Many people w/ autoimmune diseases have low D. Just going on vit. D helped w/ the bone pain and some of the fatigue.
Sweetie, we are here to help in any way. We've all eiether been where you are or are currently going to through the struggles of getting diagnosed.
Some things that you can do right now:
1. DE-STRESS YOUR LIFE (very important, stress is the #1 trigger!)
2. stay out of the sun
3. try to eleminate as much sugar as possible
4. get good sleep. If you are not sleeping well, I suggest maybe useing Benadryl.
5. take vitamins. anyone w/ digestive problems has problems absorbing nutrients and NEEDS to supplement.
6. try to eat as healthy as possible, also drinking plenty of water
We are praying for you,
God bless ~Kara
There are 11 criteria for a lupus dx. You must have at least 4 of the 11 to recieve a dx.
They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test
Other symptoms are:
fever (90-95%)
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few
Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.
Autoimmune diseases can be very difficult to dx and usually takes years for dr. to put all the puzzle pieces together. The reason is, not all of the symptoms happen at the same time. They come and go too. I can feel like there is nothing wrong with me one day and the next feel like I'm dieing. The #1 symptom of lupus is severe joint pain, usually in the knees.
You need to also ask your dr to check you vit D level. Many people w/ autoimmune diseases have low D. Just going on vit. D helped w/ the bone pain and some of the fatigue.
Sweetie, we are here to help in any way. We've all eiether been where you are or are currently going to through the struggles of getting diagnosed.
Some things that you can do right now:
1. DE-STRESS YOUR LIFE (very important, stress is the #1 trigger!)
2. stay out of the sun
3. try to eleminate as much sugar as possible
4. get good sleep. If you are not sleeping well, I suggest maybe useing Benadryl.
5. take vitamins. anyone w/ digestive problems has problems absorbing nutrients and NEEDS to supplement.
6. try to eat as healthy as possible, also drinking plenty of water
We are praying for you,
God bless ~Kara
wow thanks for posting, I knew someone else would who had more knowledge than I do.
I had no clue though that The #1 symptom of lupus is severe joint pain, usually in the knees...my ANA was negative but my neurologist suspected Lupus so I'm going to ask my dr to redo the tests if she didn't order it (blood work next week).
I had no clue though that The #1 symptom of lupus is severe joint pain, usually in the knees...my ANA was negative but my neurologist suspected Lupus so I'm going to ask my dr to redo the tests if she didn't order it (blood work next week).
Thank you for responding! I love you! (In a friend way, of course..lol) but your right, now at least somebody will listen to me...I just feel like my body is breaking down, I do have back pain,leg pain and stomach cramping ALL the time...and of course there's the tachy and so forth....and now I have to wait...the waiting is so nerve racking! Scared,anxious and nervous!
Oh and Lisa, my test said "homogenous"...what does that mean?
Weakandfalling, It's true, I am grateful for becoming one step closer to a diagnosis, here I was thinking it IBS...
Karajo, I really appreciate your response, I do have some of those symptoms...and even if it's not Lupus, I definitely have a autoimmune disorder, which is scary in itself...when I was told, "your body is attacking itself"...oh geez! In my head, I pictured all of this frantic chaotic mess going on, my cells going haywire...and with me, I usually feel pretty good except for the digestive problems...My back usually hurts from sitting to long and then I feel really stiff, I have this "nodule" on my lower right sacrum, I thought was a tumor but had several tests done, I have a twisted pelvis...but right now, for the past month, my left leg has been hurting, like I can't bend it, imagine sitting Indian style....hurts not excrusiating but I can feel it all the way up to my tailbone...I do get headaches, mostly tension and sinus...and for the past few weeks, my throat has been hurting, it's mostly when I wake up, then it goes away after awhile....I hate waiting...it's so scary, I've had a family friend die of Lupus 10 years ago...and that's all that keeps going through my mind :(
Jules
Weakandfalling, It's true, I am grateful for becoming one step closer to a diagnosis, here I was thinking it IBS...
Karajo, I really appreciate your response, I do have some of those symptoms...and even if it's not Lupus, I definitely have a autoimmune disorder, which is scary in itself...when I was told, "your body is attacking itself"...oh geez! In my head, I pictured all of this frantic chaotic mess going on, my cells going haywire...and with me, I usually feel pretty good except for the digestive problems...My back usually hurts from sitting to long and then I feel really stiff, I have this "nodule" on my lower right sacrum, I thought was a tumor but had several tests done, I have a twisted pelvis...but right now, for the past month, my left leg has been hurting, like I can't bend it, imagine sitting Indian style....hurts not excrusiating but I can feel it all the way up to my tailbone...I do get headaches, mostly tension and sinus...and for the past few weeks, my throat has been hurting, it's mostly when I wake up, then it goes away after awhile....I hate waiting...it's so scary, I've had a family friend die of Lupus 10 years ago...and that's all that keeps going through my mind :(
Jules
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?
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 :(
~Karajo, Thank you for your response, I'm just so really anxious and scared, because in my heart...SLE is what I have, I'm trying to be positive but when you have "professionals", like the ones that I work with, tell me that it "really" sounds like SLE and that it explains all of my complaints...really has me leaning towards this diagnosis...I just see it as a "death sentence", please excuse me if I sound horrible but I see it as a type of cancer...I'm terrifed!! I just can't imagine something attacking my organs, much less my own body attacking itself?! And other then the stupid palps and digestive issues..(I do have hematuria and tension headaches...but my don't feel my kidneys or bladder are an issue..you'd think my urologist would've said something)...I don't feel sick, no fever or fatigue...no rash...but because I have a twisted pelvis, my hips give me problems(I also had relations...lol...sorry and hurt my left leg and I can't bend it a certain way so my leg has me worried, like is this related to SLE?) so now the tension headaches I get, and every other complaint I feel all comes down to one thing...I have SLE...I'm so scared :(
~Lisa, Reading what you wrote, made me sad...you NEVER once did anything wrong, you didn't take over or hijack my thread...you're my buddy! And if you EVER need to vent again...I'm here for you...if I could, I'd give you my private email and phone number...just let me know if you ever want it...you're an awesome person, I like you onrey ;)
And YOU have also been a great friend to me!!!
Jules
~Lisa, Reading what you wrote, made me sad...you NEVER once did anything wrong, you didn't take over or hijack my thread...you're my buddy! And if you EVER need to vent again...I'm here for you...if I could, I'd give you my private email and phone number...just let me know if you ever want it...you're an awesome person, I like you onrey ;)
And YOU have also been a great friend to me!!!
Jules
jules please pm me your info and I'll send you mine - I got another message from another moderator that explained I did nothing wrong and it's ok to ask questions I just have to remove myself from MH and try to step back and take care of myself and not let something someone did, I don't even know hurt me so much.
I sent you my info, sent it to your profile...please contact me!!
Jules
Jules
Sweetie, truely I understand emotionally what you are saying. But I want to share some things that might put you at ease.
I remember when my Primary Physician told me it was looking like lupus and referred me to a rheumatologist. I was terrified. I had read up on lupus and it all scared me. I felt like I had came close to dieing at one point. Turned grey and pulse was 35 BP 45/35. I was too weak to even open my eyes. I truely believe God brought me through that valley of the shadow of death. So I'm telling you this so you will know, I understand where you are coming from.
But I also want to tell you that the death rate for lupus is not very high. I won't lie to you, people do die from lupus, but it is rare. If treated, most serious complications are treatable. Most of the people are able to even hold down a job. There was a time when lupus was a death sentence, but not anymore. Researchers have discovered new ways of treating complications. And without a doubt, the most valuable tool of rising above this illness is ATTITUDE. You can ask anybody on this forum who has lupus and they will tell you the same thing. I made a decision to be thankful. To enjoy even the little things in life. And to laugh...a lot! I laugh at everything. I mostly laugh at myself. The goofy stuff that comes out of my mouth. Words get all twisted. It's like I have mental dislexia. So I say I'm squirrely brained.
I will also tell you that depression is a symptom of lupus. I know this personally because I can have a flare and have no reason to be depressed, even telling myself it's only a day and tomorrow will be better. That depression thing is nawing at my heels. Those are days I try not to burn any bridges (if you know what I mean) Because I know what I'm going through today is only temporary.
We are here for you and are prayin for you, ~Kara
I remember when my Primary Physician told me it was looking like lupus and referred me to a rheumatologist. I was terrified. I had read up on lupus and it all scared me. I felt like I had came close to dieing at one point. Turned grey and pulse was 35 BP 45/35. I was too weak to even open my eyes. I truely believe God brought me through that valley of the shadow of death. So I'm telling you this so you will know, I understand where you are coming from.
But I also want to tell you that the death rate for lupus is not very high. I won't lie to you, people do die from lupus, but it is rare. If treated, most serious complications are treatable. Most of the people are able to even hold down a job. There was a time when lupus was a death sentence, but not anymore. Researchers have discovered new ways of treating complications. And without a doubt, the most valuable tool of rising above this illness is ATTITUDE. You can ask anybody on this forum who has lupus and they will tell you the same thing. I made a decision to be thankful. To enjoy even the little things in life. And to laugh...a lot! I laugh at everything. I mostly laugh at myself. The goofy stuff that comes out of my mouth. Words get all twisted. It's like I have mental dislexia. So I say I'm squirrely brained.
I will also tell you that depression is a symptom of lupus. I know this personally because I can have a flare and have no reason to be depressed, even telling myself it's only a day and tomorrow will be better. That depression thing is nawing at my heels. Those are days I try not to burn any bridges (if you know what I mean) Because I know what I'm going through today is only temporary.
We are here for you and are prayin for you, ~Kara
Hi Kara,
96% of that symptoms you described my son has been suffering from for the past 2 and half years. The doctors have told us they cant help us anymore unless his joints swell enough for them to get an FNA.
His ANA is 1:320 homo, speckled. He also urinates ALOT more frequently now. We have tried different doctors, seen 2 Rheumatologists. He is now 17, gone from a outdoors, positive, social athletic boy into sports to now sitting in his room, trying to escape the pain. He really tries to be normal but pays for it physically for days.
I am at a loss as to where to go from here. How can I best help him??
96% of that symptoms you described my son has been suffering from for the past 2 and half years. The doctors have told us they cant help us anymore unless his joints swell enough for them to get an FNA.
His ANA is 1:320 homo, speckled. He also urinates ALOT more frequently now. We have tried different doctors, seen 2 Rheumatologists. He is now 17, gone from a outdoors, positive, social athletic boy into sports to now sitting in his room, trying to escape the pain. He really tries to be normal but pays for it physically for days.
I am at a loss as to where to go from here. How can I best help him??
So sorry to hear that your son is suffering so. I am not familar w/ FNA. What is that? Does your son's joints swell some?
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