Pain, ANA and bone health

[Kali23]

Hello,  I am a youngish 35 year old woman suffering from multiple osteochondromatosis (with osteoarthritis and osteoporosis), pure autonomic failure and kidney stone disease (i.e. multiple stones).  While I am in fairly good health despite this, I have actually felt miserable (with Chronic fatigue syndrome, dizziness, fainting, numbness, and general malaise) and have been in some sort of pain or another for about 15 years now.   In particular I have had this sharp pain beneath my scapula for about two years now, and indeed, it has gotten so bad that if I do not get better over the next year than I will consider suicide because I know that I will not be able to work and do not know how I will support myself otherwise (and this despite the fact that I am for the most part happy and content with other things in my life).  Part of the problem is that I can not sleep and it causes me to throw up, and so I am simply worn down.  It is so bad some mornings that I can not physically sit up without crying, and I am afraid of losing my place in the world.  Also, I fear that I am getting addicted to pain medicine, but do not seem to have a better option for dealing with this condition.  After all, I have to make it to work and I have a life to live.... I guess my question is that for the past 15 years, I have had an ANA of 1:2560.  While the doctors say that this alone is insignificant-- I am having a hard time trusting this advice given my pain symptoms. However, I've seen some wonderful doctors and some truly awful ones, and so I do not want or need to doctor shop.  Also, I do not want to be paranoid. However, it has been my impression that while a lower ANA is common, such a high titer is something to be concerned about.  I certainly can not ignore the fact that despite my complaint, I am really in excellent health and really do not think that I have something as serious as lupus or rheumatoid arthritis.  Indeed, I am in much better physical condition than even people 10 years my junior and so maybe this should be enough to make me less anxious about this issue.  Despite this, I guess I would like some answers.  Is it common for people with MO to have Antinuclear antibodies?  Should I continue with what I am doing and hope that things work out for the best?  How do I escape this trap that my body has created for me?  I really am not depressed, but really I also do not have any other ideas as to how to deal with this situation. The future is terrifying.  Thank you for your advice....

[Kali23]

Thank you.  I was extremely unhappy with the rheumatologist that I did see for this issue.  While I generally have gotten good health care, this guy was pretty dismissive and given my over all good health he absolutely did not think that the other blood work was necessary.  Also, I have had this blood work in the past and it has been okay.  However, I will ask my primary care physician for a referral to a different rheumatologist.

[Kevin Pho, MD]

An ANA level of 1:2560 is a very high titer.

Obtaining more specialized auto-antibodies should be done.  These include anti -ds DNA, -ss DNA, -histone, -Sm, -Ro, and -La.  

A referral to a rheumatologist, preferably at a major academic medical center, should be considered to discuss the findings.  If you've already seen one, I would obtain a second opinion.

It is true that a small proportion of people without disease can have an elevated ANA level.  However, disease has to be ruled out first.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patients education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
www.kevinmd.com