Positive ANA, excrutiating pain but nothing can be found

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Porter15
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 11/2/2010 11:53 AM (GMT -7)   
I am a 28 Y Male. For the last 6 months, starting on May 28th of this year I have been experiencing excrutiating pain. It started out with a very sharp interior chest wall pain that at very first I thought was a strong case of heartburn, after a couple of days I started noticing that the pain would feel so bad I would actually contract my hands into a backwards position as if I had cerebrial palsey for about 10 seconds which seemed like a reaction to the pain or maybe it made the pain not as bad, I could not really tell why I was doing it. Now 6 months later I am almost to the point of being bed ridden some days. My whole body aches extremely bad, I will have very odd muscle lock ups, Mostly in my leg muscles, twitching, and I contract my feet sometimes now as well as my hands. I still have the chest wall pain from time to time, and Feel like somedays I will die the pain is so bad. I lay in bed for hours sometimes screaming. I have seen 5 different doctors since this all has started. Family Doctor, Nuerologist, general surgeon, 2 different rhuemotoligists and I have gotten nowhere. They have done every blood test imaginable. The only test that shows up out of whack is my ANA. It is 1:640 and a speckled pattern, they originally diagnosed me with Lupus, but then after seeing the Rhuem he said it was a false positive, Although my ANA is positive, I have a normal sed rate, RNP Antibodies, SM Antibodies, histone is normall, I have been tested for Sjogrens, Hoshimotos Thyroiditis, Hep C and all came back either normal or negative, I have no inflamation, And my CBC was normal as well. I have had laproscopic gallbladder surgery on sep-30th and that did nothing for me. They have also tested my thyroid an my TCH was .27 which is a little low, however my T3 and T4 were normall they said, my Vitamin D was also normal. At this point my doctors are questioning the validity of my pain, and while they question it my pain gets worse and worse by the week. I have felt pain in my life, I am sure everybody has. This is a 10 on a 10 scale and it is not like anything I have ever felt before, not only is it painful, but I am weak, and I am getting to a nonfunctional state quickly. My mom is a nurse, my brother a paramedic. I myself do not have any medical degree other than just what I have learned growing up and through this illness. This is the best description I can give, does anyone have an idea of whta it could be?

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8443
   Posted 11/2/2010 12:20 PM (GMT -7)   
I would say seek out the help of a good neurologist maybe even another rheumy and get some brain Mri's done maybe even hand Mri's
Bloodwork is not always definitive, it can change from day to day, but MRI's are different in that they are better at
picking up on stuff...I too had normal blood work except for vitamin d, B-12, and a few others things yet my hand MRI shows
joint damaged that my rheumy says is RA, My sjogrens biopsey was not inflammed enough but my rheumy said that it
could be that I'm in early stages of sjogrens, so please don't let them tell you it's nothing if they only go by the bloodwork.
Please try to find better doctors, (they are out there) and get MRI's or CT's done. Personally I think that if
your ANA is off something is going on in your body, make those doctors listen...
Remember we are not doctors and can only offer up advise..
I hope you can get a low pain day soon
(((((((((((((((((((((((((((((((((((((((((((((((Porter15)))))))))))))))))))))))))))))))))))))))))))))))
Healing Hugz
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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6855
   Posted 11/2/2010 1:02 PM (GMT -7)   
Were both rheumatologists in agreement that your ANA was a false positive? Also, did they test for Scl-70 kD kinetochore (Anti-Topoisomerase I) Antibody and the Anti-La (Anti-SSB) Antibody? Those can also be found in people with speckled pattern ANAs. Also, did anyone test your Complement levels [C 3, C 4 and CH50? Results outside the normal range on any of those tests can be indicative of inflammation levels. Did they run a CRP? Sed rates can be normal in people that are having lots of inflammation. The CRP is more sensitive in determining inflammation sometimes.

Get yourself to a different rheumatologist. Sometimes it can take a while to get to the bottom of these mystery type illnesses.
Moderator Crohn's disease and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/2/2010 4:35 PM (GMT -7)   
Hi Porter, I can't really offer any more than has been said only to say I have a high ANA and normal bloodwork but because of my symptoms have been diagnosed with sero negative rheumatoid arthritis. You need to find a specialist who will diagnose from symptoms. When I had costochondritis my chest pain was agony.
But I'm not a doctor I have no idea what could be causing your pain keep searching for a specialist who will listen to you, golitho

Porter15
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 11/3/2010 12:18 PM (GMT -7)   
I have an appointment with a Nuerologist on the 11th. I am not sure what good that does right now, but they did up my pain medicine, so I do not feel as much pain. I think it could be NMS or seretonin syndrome, I was on a high dose of Seroquel when all this started, but alot of these symptoms have been present since 2007, but I always chalked it up to just being depressed. Since may 28th all the symptoms got extremely worse so I knew the last few years were not depression but this disease getting worse. Had the symptoms changed instead of worsening I could understand the Bi-polar Diagnosis and things would be a lot different right now. I have been on Valuem, Lexapro, Risperidol, Zyprexa, and about a handful of other meds since 8-07 when all these symptoms started. Like I said, when this all started they were very mild symptoms and were mistaking for psychiatric conditions at the time. So maybe some of these medicines have cause more damage since then, especially changing them so often as they did. Thank you for your guys imput, If anymore of this info helps in understanding what this could be please write back. I am thankful. Marc

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8443
   Posted 11/3/2010 12:38 PM (GMT -7)   
When you go to your appointment have everything with you that you wish to ask,
maybe ask about gettting nerve testing done, that has to be scheduled as it takes over an
hour for this test it's called a EMG testing, also ask about maybe getting MRI's done
of head neck and lower back.
Good luck on your appointment and keep us posted as to how it goes..
((((((((((((((((((((((((((((((((((Marc)))))))))))))))))))))))))))))))))))))))))))))))))))
Healing Hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Porter15
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 11/3/2010 1:09 PM (GMT -7)   
I believe I have already had an EMG. Is that where the Nuerologist sticks you with a very thin plastic needle and then moves it around a bit while checking something in your muscles and looks at a machine while she is doing it? Then she sticks you about ten more times before its over?

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8443
   Posted 11/3/2010 8:19 PM (GMT -7)   
So, what were your results from that? I had my done
in April and it showed that I have nerves dying...and from
there I've had lots of testing done...It was very painful.
So I guess you should ask about mri's and maybe ct scans...
Well wishes to you.
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