Looking for Answers

[MandiH1980]

Oh this is going to be a long post I apologize in advance.  It all started 8 days after my 30th birthday.  I had awful pain in my back for about 2 weeks but it was finals time and couldn't seem to find time to make it to my doctors.  On the day of my last final I couldn't even sit for more than 10 minutes of it I was in AGONY! I ended up leaving my final to go to the ER.  I had periodically had bouts of back pain since I was about 16 it was so bad that I actually had to quit playing sports in high school.  They kept telling me it was "growing pains."  This was the same pain I had experienced but WAY more intense.  It took a year of going to many doctors, most thinking I was crazy in the head before they figured out it was sacroiliitis.  I had the SI Joint injections and had pretty good pain relief fro about 8 weeks.  I still had a lot of morning stiffness but once I got moving (usually an hour) it was tolerable.  The MRI I had was not of the SI joints, but instead it was of my lumbar spine since they did find spina bifida occulta in the original x-ray.  They came back telling me it was osteoarthritis.

While being treated for the sacroiliitis I developed scleritis (an in flammation of the whites of the eyes).  They have been trying to treat it ever since but it keeps coming back.  My eye doctor said he thought it might be autoimmune and related to my arthritis.  He thought it would be a good idea to see a rheumatologist.  He wasnt able to give me a referral, so I contacted my primary care.  He too agreed I needed some blood work. He did and HLAB27, RA, and Lupus testing.  The only thing that came back as abnormal was my CRP.  My HLA B27 was negative.  When he sent my records to a Rheumatologist they said that I didnt need to see them.  

Normally I would be comfortable with this, however, while this was all going on I called my biological father to ask him about family history for medical issues. (My eye doctor told me to call and get info if I could)  He was an absent parent and I was raised by my step father.  I until this point had no clue about family history. Turns out My grandmother, Uncle, father and younger half brother all have AS.  He made it a point to tell me that ALL of them were HLA B27 negative. I shared this with my doctor and he said that the fact that I am a girl and HLA B27 negative means I can not have AS.  My father also informed me that they all have confirmed AS from fusions of the SI joints and some are fused up to their neck.  

I guess I just need to know where to go next.  I don't usually worry about what it might be, but when I read the symptoms of AS it was like a light bulb went off.  I read a few articles that say a few more genes might be a factor in AS makes me wonder if with my strong family history of it that I could really be suffering with AS instead of osteoarthritis.  I don't think it is OA because moving around and staying active helps it.  OA is only supposed to be relieved by rest.  I have also been seen by a Gastroenterologist for what they believe is "IBS" but they havent done any tests to rule out UC.  

So can bilateral grade III sacroiliitis, IBS and eye infammation be something different? Totally independent from each other? How do I get a rheumatologist to take a look at me?  I guess I just in my gut feel this is something more serious.  The doc even said that a 30 year old should not have OA in the spine, it is not very common.  

[marky8725]

Hi Mandi,

While my case is nothing compared to yours, I would get alot of joint and back pain from delivering water jugs(similar to Culligan) but a lady I actually deliver to turned me on to a juice called Xango.  Long story short, no more pain.  It's been great.  Go google "Xango" and then get back to me.  Thanks.

[trying43]

With ur symptoms it sounds like AS.  I am female and I also have it but I have the hlab27 gene.  Have them retest, maybe it was a lab error and if all else fails see another dr.  Its possible you may have all these things and they are just independent from each other.  I had numerous symptoms but it turns out they were 3 totally different things. (AS, seizure disorder, and vasculitis) It took me about 6 years to finally get a diagnosis and countless drs.  I finally went to a research hospital and they figured me out. Good luck.