NEED CLARITY on neg/positive ANA results and MYSTERY SYMPTOMS!!!!!!

How many doctors did you see, before you were FINALLY DIAGNOSED?
1 - 25.0%
2 - 0.0%
4 - 0.0%
7 - 50.0%
9 - 0.0%
10+ - 25.0%

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New Member

Date Joined Nov 2011
Total Posts : 1
   Posted 11/28/2011 6:27 PM (GMT -6)   
In need of some CLARITY idea ..........
Soooooo, I've been having these on again/off again mystery symptoms that NO DOCTOR can seem to put together!!! The ER has become my second home!!! I'm at the ER at least once a month, and no I don't just go to check up on the staff  eyes  (lol).
Within the past 6 months, I have gone to the ER for:
left arm numbness (accompanied with palpatioon that have lasted for 10 mins), constant migranes, fatigue in the morning (which most of the time keeping me bed bound), through out the day, and sometimes seem worse at night, tingling in ALL extremities, right knee joint pain and right elbow joint, swelling in both feet, right knee and NOW my right hand! 
SN: In March of this year, I went to the ER for leg pain, that was hot to the touch, redness and with calf swelling. I was diagnosed with Superficial Thrombolitis, which is inflammation in the superficial veins).
Back to story...
I had a CAT SCAN done in June, some abnormalites were shown; so I was suggested to get an MRI. I had the MRI w/ contrast done in August and some white matter was found, but "nothing too severe"  nono , says the Neurologist. I also had blood work done in September and my ANA was positive 1:160, with pattern showing to be homogeneous/speckled. My primary care physician referred me to a Rhuematologist, who did further test for Lupus and other auto immune disease; but my results came back fairly NORMAL, except for the following:
Dilute Prothrombin Time(dPT)L: 46.7 (which was FLAGGED as H), WBC: 3.4 (which was FLAGGED L), Neutrophils (Absolute): 1.6 (which was FLAGGED L), and my Vitamin D: , 25-Hydroxy: 19.4 (which was FLAGGED L). 
Since then, I have done some digging of my own, within my medical records/ old blood labs (THANK God I listened to my mom, and made copies of EVERYthing), and discovered that I had an ANA count done in 2010, but results were NEGATIVE...
I PERSONALLY FEEL, that I may have Lupus.. But, because I haven't experienced patches of hair loss and/or any butterfly rashes, that I'm being pushed to the side smhair . How can I have an ANA that was negative last year, and a POSITIVE ANA this year?!!!!

Post Edited (noteasilybroken) : 11/28/2011 5:33:20 PM (GMT-7)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 11/28/2011 7:09 PM (GMT -6)   
When I was tested several years ago for thyroid problems they ran an ANA test on me. It was negative then. This past Feburary I was tested again and it was positive.
I believe that the ANA levels can change.

What medications are you on now? Plaquenil helped me with the swelling and pain.

Regular Member

Date Joined Sep 2011
Total Posts : 79
   Posted 11/30/2011 9:42 PM (GMT -6)   
I had a positive ANA when I was pregnant with my first child 21 years ago. Nothing was really done about it though. My whole family is an autoimmune mess, my son type 1 diab with thyroid disease, my daughter graves disease and polycystic ovary syndrome. I have had some symptoms for as long as I can remember. NOW here goes, in June I had a surg that went way way way bad and I almost died. I was in the hosp for 22 days. After all of that mess I never recovered, I am going bald and I soooooo wish I was exagerating. I feel like the tinman and I need to have my oilcan with me at all times. I am so foggy and sometimes confused I annoy myself. I kept telling the docs what was happening but because it involved pain they did what we do to our patients.......I got blew off. I guess they thought I should have been better but I was really going down hill. Here now is where I get to how this may have happened to you. My brother is a very excellent cancer surgeon and he said due to the traumatic event it created a "flare" Also my vit d is only 16 my calcium is only 6.5 my liver enzymes are elevated and my ferratin is onlya 6. When the ferratin thing happened in Feb I had to get 12 bags of Iron. I cannot describe the feeling in my mouth. It hurts so bad like someone put indoor outdoor carpet in my mouth and I have bumps on my tongue a which something on the side of my cheek. My eyes are so dry my contacts rip while I have them in. I am so tired so very very very tired I am now taking Vyvanse because of it. I fall asleep at traffic lights I am isolated by my health. I got my ANA test ran but not until after my Dr rolled her eyes at me. It came back 1:320. None of the other tests came back positive for me either. It did buy me a referral to a rheumatologist. He said that with an ANA of that fam history that is unbelievable. Oh yeah my Aunt died from MS my rheum said he is calling it Lupus. He put me on Plaquenil and Prednisone but the pred was just for 3 weeks tapering down. It wasnt three days until the symptoms came back and getting stronger by the hour but the mouth thing got the worst of this flare. I work for my new PCP and he is amazing he said that I have autoimmune Hepa*** and Lupus and I will probably always have to do some kind of prednisone main reason being I had gastric bypass 9 years ago. I ma having a serious absorption problem all of my vitamin levels are very low my Dr also told me he thinks that I am "oozing" from somewhere. Anyway my brother the cancer surgeon said you never know surgery became so major and I hadn't been able to keep anything
in or down for about three weeks prior to surgery The person who puts you to sleep (sorry cant find the word in my head"I don't know what happened. I woke up with a 4xs its normal size, intestines knotted aboud a HUGE hernia and stones in my appendix. That stat bloodwork could have helped me not go thru this After 4 days there my legs were getting HUGE GINORMOUS and I started having difficulty breathing. I By friday I could barely walk due to the weight of my legs and saddle bag area. I called the surgeon that did the surg and ...are you ready....he said tell her to go to her PCP. Yup I typed it outloud :) I was in congestive heart failure and I normally weigh about 140 but due to the edema I weighed 190 and was I couldnt eat so I had to have a pic line for TPN...well I mean I could eat but very little I already have small stomach due to gastric bypass so I only absorb about 60% of that which made getting enough food in was hard. After a few bites I get sickly full. Well all those symptoms are still here and they must be working on their PhD You have extremely significant symptoms of it
Now, my ana was 1:320 now after the pred and plaquenil it is 1:160 So I was told by my rheumy that I have Lupus despite the secondary testing that they do coming back negative. Boy wasn't I just windy tonight?
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

Regular Member

Date Joined Dec 2009
Total Posts : 130
   Posted 12/1/2011 12:28 PM (GMT -6)   
hey Joy-just a question.How much plaq are you on?I have been on it a year,and the first 8 months were Im feelin kinda crappy again,alot of heart palpatation etc.Im on 400 a day(lol,not pills,that sounded weird!)Was wondering if they will increase it.What do you think?

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/1/2011 6:51 PM (GMT -6)   
I'm on 400mg a day, too.
I think we cycle through flares. I'm in one now...very tired, coughing, and achy.
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