So maybe my husband finally has a diagnosis...

So today I accompanied Jake to a doctor's appointment and, for the first time in years, I felt like we had a real answer when we left.  I was so pleased with the appointment, I almost forgot about the fact that we had to wait almost two hours before actually seeing the doctor. :\

First of all, let me say that I found this doctor.  I did the research on pain centers in Tucson.  I made phone calls to see which ones would accept Jake as a patient.  I bothered Jake's other doctors until someone wrote us a referral.  That being said, we ended up with a doctor with a pretty great background.  Voted one of Tucson's best doctors in 2008, he has a Ph.D. in microbiology/immunology, has his M.D. in neurology, did his fellowship in anesthesiology interventional pain management, and currently teaches classes at the U of A's college of pharmacy.  So....  he was able to have a good perspective on the potential for Jake's condition being autoimmune related (as proposed by our neurologist), while also knowing a lot about neurological spinal disorders and the proper way to administer pain meds if the need arises.

So... after asking Jake just a couple of questions, reading his chart that says no one can find anything wrong, and then actually touching Jake to figure out where the pain is (I can't remember the last time I saw a doctor do that), he had it all figured out.  So... what's causing Jake's pain, then, you ask?  Well, apparently Jake has bursitis in his legs/butt and thoracic spondylosis in his back and the two are actually unrelated.  Obviously, when the doctor came back with a diagnosis so quickly, we had questions.... but this doctor had good answers for everything we asked.   But in 2007 a doctor already tried to treat Jake for bursitis....  Since the doctor did not use an xray to guide the lidocaine injection, his chances of actually hitting the correct area were only about 33%.  Why has nothing ever shown up on an xray/MRI?  Spondylosis and bursitis won't necessarily show up on scans.  What about Jake's high Hashimoto's antibodies?  If Jake really had pain due to antibodies, it should not be showing up so specifically.  Usually it presents itself more diffusely, a generally achy feeling.... not specific spots like Jake describes.  Also, while IVIG might reduce the antibodies it should not effect the pain, other than maybe mess with the autoimmune system in a way that might cause the body to reduce its own pain response slightly.... but the risks associated with a plasma transfer from so many donors is not worth the slight benefit that it may or may not provide.

We also found out that Jake's slower social development could also be a contributing factor to his pain.  Children who have developmental disorders (even just social ones) may also have developmental issues with pain response and it is very possible that because of this, Jake has an increased sensitivity to pain as compared to your "normal" young adult male.  Which, to me, makes a lot sense.

Alright...we have a diagnosis... now what?  Well, in about a week, we will return to this pain center and Jake will get an xray-guided lidocaine injection into the bursa between his legs and butt.  He will also get a facet joint injection of temporary anesthetic at the nerves near his back pain.  He will then rate his pain to see if it goes away.  If the pain disappears completely, after one more diagnostic test to rule out the placebo effect, Jake will get those same nerves cauterized and his pain should be greatly diminished if not removed altogether (at least until the nerves repair themselves 6-12 months later).  If Jake can go in for injections every few months and not have to take dozens of medications each with dozens of side effects and not be in pain....  I think we both would be very very happy.

Anyway... I'm very excited that something good might finally be happening.  It's about time!  So...  *knock on wood*  things are looking up!