Aa
Aa
A
A
A
Close
450439 tn?1249233238

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....
34 Responses
Sort by: Helpful Oldest Newest
Avatar universal
It does no good to allow ourselves to be over stressed. Try some lite yoga and meditation. That said, with proper treatment it can be controlled. Stress is at top of the list of things that trigger flares. Good luck. I totally understand how you must be feeling. Dont stop untip you are happy with the care you are getting. Autoimmune disorders seem to be misunderstood in the healthcare community. More training should be geared toward these diseases. We need to speak up
Helpful - 0
Avatar universal
Make your self a favor and test as suggested lower your vit D and most importantly, test yourself for Bacterial infections specifically Chlamydia Pneumonia and Chlamydia Trachomatis, Borrelia Burgdorferi.
But be aware that the Antibody (immunoglobulins) tests will be positive only if your immunity is strong enough to produce the Immunoglobulins in the first place.and you need to make sure you have a strong immunity  and enough Vitamin D above 35 ng/ml. and LYM between 2,0-2,5 with IRI (or CD4/CD8) closer to 1,0...
I hope you have some immunologist who understands Bacterial infections, long term medication principles and immunity support, detox and regeneration...
Helpful - 0
Avatar universal
You are not very smart,are you?
You HYPOCHONDRIAC!!
Now, i am a hypochondriac myself so i am telling you this as a hypochondriac to another hypochondriac:these symptoms aee very vague.
They could be from muscle stress or stretch.
Coming in here instead of a psychiatrist is not going to help you,i don't know if you are already diagnosed after all these years but even if you are diagnosed this is not due to the symptoms you describes back then!
You HYPOCHONDRIAC!
Helpful - 0
4 Comments
Jeezo Megahypo you are an arse aren't you!
You;re right Glittergirl, s/he is, but s/he only posted once last year, so I would just ignore it.
If this happens again you can report it as abuse and the post will be wiped off by medhelp.
Niko
hey , *******. how dare you ...the audacity to undermine another persons  problem. get over YOUR damn self , ******* narcasistic, cold *** duck. you don't know ****.wanna come on here and make people feel worse? go beat your wife. duck your man up his *** or whatever else you do to make yourself superior... you ******* **** face!
lucky for you duck came up ...I meant **** **** FACE
Avatar universal
i know it takes along time to get dx of lupus i have been trying for ten years now .i have 90% of symptoms ana poss blood in urine fatigue mouth sores and on and on .feel great one day and in bed for the next i am a guy so i think it makes it harder for doctor to listen ....to all god bless and dont give up
Helpful - 0
1530171 tn?1448129593
Hi lesnic79.

This an old thread and peaches911 has only posted once in MedHelp and it's the one on this thread, on Feb. 23, 2013.

Nonetheless, I took the liberty to reply to your question.
I'm also from Ontario, I'm familiar with IVF-our daughter was born through IVF  (second try) and also familiar with A/I diseases.

From the symptoms you're describing, it sounds like hypothyroidism.
Now, the situation with OHIP is that when you get tested you'll likely get
TSH, T3 & T4 serum thyroid tests and sometimes only TSH and T4.
These tests do not necessarily indicate accurately thyroid function, only circulating thyroid hormones in serum.
The proper ones to assess thyroid function are: Free T3, Free T4 & Reverse T3.
Two possible issues with this:
1) Your family doctor or Endocrinologist may not be open to these.
2) There might not be a health code for these tests.
OHIP is on the verge of making additional cuts again, so that means that people are going to pay out of pocket for vital tests that have to do with very fundamental aspects of their health, like PROPER thyroid testing.
Worth every penny though, if you you have to pay and it's not so expensive.

Hypothyroidism is a condition that to my opinion needs to be ruled out or
to be regulated well, before considering another IVF cycle.
BTW,the Liberals had promised  paid IVFs ( pre-election bone for voters)
and now OHIP has approved payment for only the 1st IVF cycle as of 2015.

Hypothyroidism has to do with the diminished ability of cells to repair, heal, perform  maintenance and their required functions and so on, when thyroid function is low and cellular energy levels being sub-optimal, affecting all processes in the body.

Classic symptoms are fatigue, weight gain, cold intolerance, low temperature, elevated cholesterol, joint or muscle pain, depression and more. You have most of these.

Also consider reading a thread started by Ginger8888 in this community on June 23, 2014, where I posted a couple replies with some information possibly pertinent to you also. (this saves me a lot of time- typing up all this
information again)

Please let me know if you need any details, however, my suggestions and comments are not intended to replace medical advice.

Best wishes,
Niko
Helpful - 0
Avatar universal
Hello everyone.  I've experienced many symptoms that several people are complaining about.  I have the following symptoms:

Right leg pain (very severe at times)
Lower lumbar pain
Cold intolerance
Internal nose dryness (all the time)
Memory loss & lack of concentration
Irregular bowel movements
Weight gain
Brown rash between my breasts
Depression
Fatigue

My ANA titre was 1:320. Also, the ENA testing came back negative for the 6 major autoimmune diseases.  I have a speckled pattern too.

My husband and I are in the process of doing IVF with 2 negative results in the past.  I'm wondering if these symptoms could be linked to a BFN (big fat negative for those in the IVF community).

If anyone has similar symptoms please let me know if they have been diagnosed with Lupus or a similar autoimmune disease.

Nicole
Helpful - 0
434278 tn?1324706225
Please keep us posted on what you find out.  Do you have any rashes?  Does your face get red?  Another thing to watch for is raynauds.  When you get cold, or stressed, your fingers and sometimes your toes get white.
Helpful - 0
Avatar universal
Thank you for all this. I was just diagnosed to same thing ANA Titer 1:80.  Only thing that's seems to be going on is my right wrist right at the nodgel joint, is sensitive when I twist it to face my palms towards me. and to touch, feels like a brush burn sort of. My Hand doctor said it may be Rheumatoid. But have and appointment Oct 3, 2013 with a Rheumatologist. So we shall see. Though  he (my Dr.) never mentioned Lupus, it does scare me as well when I search online, everything I see about it is associated to Lupus. Keeping my fingers crossed as well  
Helpful - 0
Avatar universal
Hi, Ladies
I just received blood results yesterday,and was told over the phone that either have connective tissue disease or pre-Lupus.  What does that mean? My blood work showed that I am ANA positive and the pattern is speckled 1:8.  I'm scheduled to meet with my doctor this week to discuss the results.  I plan on visiting a rheumatologist very soon.  Some symtoms I've had include soreness (in legs, feet, shoulders and lower back.)  I'm extremely tired all the time.  I have shortness of breath. If I walk up a flight of stairs, it seems like I'm going to pass out.  I've gained a lot of weight over the past year and a half.  Has the weight been a factor with you?  What advice do you have for me?  Could this lead to cancer?
Helpful - 0
Avatar universal
I just left the MD on Monday as I saw online an old lab result from 2005 (my MD just went to online labs and records this month) So Im looking amd mine said Homogenous positive ANA 1:160....I asked hom why I was told it was negative and he said "I tell people its negative if it is 1:80 or lower because otherwise it brings up too much anxiety for the patient"  So the above  lab positive correlation is correct they start low and dilute so if you went to 1:80 then that was the last dilution that you tested positive for. meaning when they diluted it to 1:140 it was negative. Your number is low and not generally considered positive. If you are symptomatic I would as that the MD continue to attempt to rule out a diagnosis of Lupus and or any other connective tissue disorders. There is a ridiculous amount of the general population who have  a positive ANA and DO NOT HAVE LUPUS.   I hope this helps to ease your fears or anxiety at least a little. Also the Lab Tech had NO BUSINESS telling you anything as it is not in their scope of practice to explain lab results. Good luck!
Helpful - 0
434278 tn?1324706225
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?
Helpful - 0
Avatar universal
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??
Helpful - 0
434278 tn?1324706225
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
Helpful - 0
450439 tn?1249233238
I sent you my info, sent it to your profile...please contact me!!
Jules
Helpful - 0
967168 tn?1477584489
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.
Helpful - 0
450439 tn?1249233238
~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
Helpful - 0
967168 tn?1477584489
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 :(
Helpful - 0
434278 tn?1324706225
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.  
Helpful - 0
434278 tn?1324706225
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.
Helpful - 0
967168 tn?1477584489
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!
Helpful - 0
967168 tn?1477584489
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.
Helpful - 0
1452192 tn?1294926931
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?
Helpful - 0
1452192 tn?1294926931
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?
Helpful - 0
967168 tn?1477584489
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.
Helpful - 0
2

You are reading content posted in the Lupus Community

Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.