Relying on Your Wisdom...

[Guest guest]

RISG Community -

This is my second post and I am desperate for your insight about what I should

do next. I am a 30 year old male who suffers from chronic reactive arthritis.

Predominant symptoms include debilitating Crohns like symptoms, large joint

aches/pains without swelling, circinate balanitis (indication of flare), and dry

eye pains.

Experienced a bout of food poisoning or gastrointestinal infection in September

2008 that sent me to the hospital for 7 days and resulted in 6 months of

recovery. Approximately one month after the infection I developed classic

Reactive Arthritis symptoms. Gastrointestinal doctor I had at that time was

clueless to what was causing pains, sent to Rheumy who diagnosed me with ReA

(HLA-B27 Negative). He said it would go away. Symptoms gradually become

minimal but never completely disappeared. No significant symptoms again until

March 2010.

March 2010 symptoms reintroduced themselves with debilitating Crohns-like

symptoms and moderate joint aches/pains yet no swelling. Connected with a

friend who is one the GI docs local to Tyler, Texas. Colonoscopy showed mild

surface inflammation, pathology sent to Mayo reported no IBD and non-specific

inflammation. Pill Cam two weeks later showed 2mm ulceration at terminal ileum

but was labeled as area where biopsy had been taken.

At the same time - local rheumatologists were booked more than a month out, so I

saw an inexperienced PA attempting to practice rheumatology. He put me on

non-coated sulfasalazine which made the situation worse. Decided it was time to

see experts, so I saw UT Houston Rheumy group (4 hours away) who are the

'experts' on AS and ReA. After 2 visits they decided to not give me Chronic ReA

diagnosis because I did not show swelling or an elevated SED rate. I was on a 3

month steroid taper which helped some initially but the effects were short

lived.

Fast forward to April 2011, my GI friend/doc thinks it is IBS now despite some

symptoms saying otherwise and the rheumy group is so far away that I am hesitant

to keep up the drive there for little help. Tried 2 weeks of Rifaximin for IBS

with no relief from pain, nausea, urgency. Essentially, I have been diagnosed

with nothing but exhibit symptoms of both diseases I mentioned, it has me

fatigued and in bed off and on.

What would you do in my situation?

Should I attempt to get into Mayo or Cleveland Clinic?

Do you have a doctor you would highly recommend?

Throughly frustrated as we attempt to pay off $7,500 in medical debt from last

year that really did not bring us any answers. Your insight is greatly

appreciated.

Thank you.