Discussions By Condition: I cannot get a diagnosis.

Autoimmune disease?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • June 29, 2009
  • 08:41 PM

I've been complaining to my Dr about various joint pains and fatigue for years now! Started out with heal spurs, ankle, knee & hip pains at various times, always asymetric but would switch sides from flare-up to flare-up. In the last 5 years or so the worst pain has been in my neck. No damage ever detected by xray but a recent MRI showed severe to moderate damage in several areas but all on the left side. My range of movement in my neck has been drastically diminished and daily activities are impacted.

My last and most severe flare up was from Feb to April. I could not lift up my head while laying down. Pain radiated from neck to left shoulder and from neck to behind my ears. I had migraine headaches for days on end. My glands were swollen. Muscles painful to touch. Developed a slight skin rash on my eyelids and on my back. Severe fatigue. My blood pressure was up suddenly to 120/105. Never ever had a hint high blood pressure before.

I have tested positive for ANA with a titer of 1:320 and nucleolar pattern 3 out of 3 tests over the last 10 years or so.
Rhuematoid Factor tested negative.

Add to this a pattern of fainting, dizzy spells and/or inability to move (that lasts an hour or two then goes away) once every 2 years, almost on the dot. My last episode was slightly different. It was almost as if my vision was a millisecond behind reality. As I moved it seemed to take a microsecond for me to see or perceive the movement, if that makes sense. I was at work & put my head down on my desk for a couple of hours and was completely normal again. It has been a year since that happened.

In my family, I have Ankylosing Spondalitis (father), Reactive Arthritis (father's sister) and PMR (mother's sister).

I had seen a Rheumatologist some years back and at the time my joint pain wasn't quite so severe and I didn't fit any classic pattern for Lupus or RA so she sent me back to my PCP with a shrug. My PCP simply wants to give me pain killers and is not very concerned about my fainting/dizzy episodes. I'm going back to a Rheumatologist again to another visit in a couple of weeks.

I think these Drs need a clue. Do these symptoms sound familiar to anybody???

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2 Replies:

  • I have a friend with similar symptoms, she ended up dx'd with Hashimotos thyroiditis, it is apparently hard to diagnose without one certain blood test because all of her other thyroid studies were normal initially. She is on medication now and doing very well. You might look into it.
    frustratednurse 4 Replies Flag this Response
  • That's a great idea to also get tested for Hashimoto's, which is autoimmune thyroiditis. But be sure that your doctor tests you for Vitamin D and Vitamin B 12 deficiencies- Two VERY overlooked problems that can cause pain and fatigue. And another thing that you should consider, is that you have a Gluten Sensitivity. It's GREATLY overlooked and is VERY OFTEN the PRECEDING CAUSE of other autoimmune problems. Meaning that the gluten sensitivity actually is CAUSING your other autoimmune problems- and you will never get rid of them unless you go gluten free.Many doctors will test for celiac disease- severe gluten sensitivity- if you ask. But unfortunately the tests usually come back negative and you get a false sense of security that celiac disease is not the problem.The only way that you can find out is to do a 60 to 90 day gluten free trial and see if some of your symptoms resolve.And get a vitamin D test in the meantime!!Kerri Knox, RNFunctional Medicine Practitioner
    kerri38846 11 Replies Flag this Response
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