Denouement

Woke up to dull pain on right only, felt good during the day, just some tiny pangs from left, and dull stuff on right.  Took IB before going to bed.  Can get in and out of bed w/o pain.  Some pain on right side when I tried to sleep on that side (abt 2-3).  So not bad.

No pain getting out of bed--sweet!  I won't take IB today and tomorrow to see if left side pain comes back.

Went to walmart at 10:30 last night, ah, the glories of not needing to wake up early for training.

Dull pain in SI during day 0-1, pain in bed 2-3, dull except when rotating onto side had a sharp but not too strong pain. 

Dull pain in SI 0-2, even while sleeping, best sleeping night in quite a while, day 2 w/ no ambien.  I am summarizing my pain, exercise and treatments in a spreadsheet and it shows what an idiot I had been about the running/resting cycle back in Feb/Mar.  I hope what I have learned will become useful to someone else, and even hopefully for me (if I am ever in training again).  

I am fasting, have a headache.(ended up being a 25+ hr fast)

Eve:  Neurosurgeon spent over an hour with me, was very kind.  Discussed my case, went through the dozens of films I brought from my mri's and xrays, and then did some manipulations, including making me squat in a catcher position for a couple of minutes to test my piriformis (not easy to do since was at 24.5 hours of my fast).  Had me walk the hall once.  No pain on walking, just right a bit weaker than left.

He says that the surgery he could do is fusing the joint, which he doesn't recommend since I am so young and it would cause more stress to my left SI and that joint might need to be fused a couple of years down the road, and I would be stiff for life in that part of my body.  He says he is not aware of anyone who scopes the SI, but will ask around, but that he might suggest a bone biopsy to get more info on what is going on at that joint.  He says there isn't an alternate explanation for why there's uptake on the SI in the MRI's besides infection or stress reaction, and he agreed its not an infection from the lab work.  He is not convinced I have A.S., and he was seeming to rely on the MRI images for that doubt, despite my genome, SI pain, and sausage toes.  He says that I can be doing more damage than good by staying off my feet this long, though he did agree with the original crutch decision.  He didn't have an explanation why my stress reaction would get worse when I was on crutches for the 5 weeks between the MRI's.  He asked if I had been on an extensive course of anti-inflammatories, and I have not.  He seemed to have some doubt if the steroid shot got in the right place.

Results:  He will call Dr. McLane.  Then I will talk to Dr. McLane about how to proceed.  He thinks the injury was likely caused by my hamstring injury and my hamstring injury may have been caused by my orthotics.  He suggested walking without the orthotics.  I may get a bone biopsy, I will ask about potentially going on another steroid round as I transition to walking.  I will proceed with trying to get into a rheum. to confirm or override the A.S. diagnosis by McLane.  Whether I have or don't have A.S. is irrelevant in the short term (other than you'd want to be on medication asap), since I am highly immobile and will need to increase my mobility gradually either way.

This appt was two steps forward, for which I am grateful.  The doctor, Dr. Gardner, was wonderful and patient with me.  I'd highly recommend if you need spine surgery :)

Best sleep in a while last night, pain 0-1 most of the time, spikes to 2.  I have been on crutches since last night in another attempt to get walking, and my legs have some weakness, likely some ligaments around my ankles, but SI feels fine as I hobble around. I always strike both feet, but vary the amount of weight the right foot gets.  

The dreaded weigh in showed not too much damage during the time in the wheelchair.  Most excellent.

Same pain Wed night, 0-1, spikes to 2.

Went to the rheum at 7am because they had a client who they though might not show up for a 7am appointment.  I got 5 hours of sleep because Paul's in a working whirlwind, getting inspired and worked til just past midnight.

I got in!  So, he asked me tons of questions about my family history, and pains from since I was a child, I always ready to talk was willing to oblige.  Physical exam. 

I can clearly see that he sees this from a rheums perspective.  Does that mean I need a second rheum's opinion on the diagnosis?  I will wait for my second appt to decide.

He says he is comfortable with the AS diagnosis, but ran a battery of more blood tests and xrays, and he wants to see my dexascan results, then we have another appointment to go over it all on July 7th.  He said that they've been barking up the wrong tree with the infection since if I'd had an infection all this time I'd be dead, and the only way I could have an infection is if I was a drug user and inserting needles in my SI joint.  It was kind of funny.  He also found it amusing that I was on crutches, as Paul said when I got home, he sees lots of people in pain and those people with arthritic pain don't jump into crutches when they have a flare up.  I explained to him how I tried for two weeks to get off the dang crutches with too much pain for success, but I still felt kind of stupid.  The doctor was nice and took lots of time with me, about 50 minutes, so don't get the idea that he was mean or unempathetic.

He said my images point toward AS and that 90% of the people with the HBL-27 genome come down with one of 5 arthritis type disease, AS being one of them.  He said it's the most predictive genome in the rheum world.  And 95% of those with AS have the gene.  In comparison, only 50% of people with RA have the RA gene.  He said each arthritis type disease had its own specific treatment (ie drug) that doesn't work on others, so he wants to get the diagnosis dead on before treatment, so we meet in 12 days and go over the other results and then come up with a possible treatment plan.

I do feel there's a chance of overdiagnosis on this.  I am naturally cynical/critical so it's hard for me to trust any doctor, and thus separate appropriate and inappropriate levels of skepticism.  I'll see how the next appointment goes before deciding for/against a second rheum's opinion.

So happy to get into a rheum within 8 days of knowing I wanted an appt, not so happy to still be in the AS column, but I am calm about it.  I am grateful for the early diagnosis if the diagnosis ends up etched in stone.

Walked in afternoon mostly, just around house.  Felt tired and tendons around ankles ached but SI did fine, pain 0-1 at night!

No pain, except in ankles (feeling of weakness and a 1/2 sprain type feel) and my right calf is tight.  Last night had two tiny twinges of pain, but they were not frequent or painful enough to assess if they were in the SI or not.  I pray this is true recovery coming on.  I haven't felt this good since Jan/Feb (on the non-pain days in those months).  I am solely walking for getting around, but trying to save myself walks around the house where I can, trying to stay sedative.  I will return to normal homemaking if I can have a week of no pain.  No pain at night.

No pain except one tiny twinge (pain level 1) during nap.