So today we saw the neurologist at Hershey, Dr. L.
I can't personally say I felt it was a great appointment, but we've been to much worse.
We reviewed what's been going on since he last saw him (office visit in July, but he performed the EMG in August as well).
He strongly feels that Jon's "acute" problems that he's been dealing with the last 7 months are directly related to the vitamin deficiencies which are a complication from his gastric bypass surgery ('04). Apparently being deficient in B12 is a pretty nasty thing, and we have zero clue how long he has been deficient.
The current plan is to have his local doctor, whether that be his family physician or the surgeon or someone new, maintain treatment for the vitamins. However, Dr. L wants to do an MRI of his T-spine (the middle), which we don't see in the records has ever been done. He is looking to see if there is visible spinal cord damage (could be from the B12 deficiency) or anything really.
Dr. L says Hershey's MRI machines are better than here in York (don't doubt that), so he said it needs to be done there. It's a drive, and I truly despise driving (I was on the road I think about 5 hours today total. ick) but it could be much worse. Thankfully, they were able to get him an appointment for Monday, the 7th, at 4:45!! So we should know results of that maybe within a week. Good news.
The part that frustrates me, though I won't call it 'bad news' is this. At this point he isn't scheduled to return to Dr. L until 6 months. Obviously that can change based on any findings on the MRI...but my fear is if nothing is found, he just endures this pain every day and nothing progresses. This part angers me. I was crying, begging the doctor to DO something. ANYTHING. He kindly listened and tried to reassure me that he was doing everything he could. I grumbled in my heart "well, it's not enough". I sputtered through tears and said this is EVERY DAY LIFE for us. We leave here today, say the MRI is normal and we don't see you for six months, and yet every. single. day. we face this. He said unfortunately there's a shortage of neurologists, which makes things even more difficult. Did you know this? I didn't. On the other hand, he said it doesn't do any good to come see him every so many weeks just to say the same things. Um, my point exactly!!! Let's do something!
Ugh. So at this point all we can do is get the MRI and pray for some answers.
Secondly, tomorrow morning Jon goes to Dr. G (who did his surgery) to get a B12 injection. They weren't very clear on a long term plan. I intend to make them GET clear on the plan.
I want to know how often they intend to check his levels, how often he's going to receive injections (I've heard people getting them weekly for long term), and who they can refer him to for help monitoring for the rest of his life, since obviously this will be an issue to keep a close eye on ... forever.
Lastly in the plan, my mother & I are going to work on finding some good vitamin supplements to boost those levels...rather than pills. She's a big vitamin guru, but we need to find affordable options. Not that I put a price on Jon's health, but we don't have a money tree either.
So...that's the update.
On a fun note, as of 8:00 in the morning when we get the girls on the bus, Jon & I will have a weekend to ourselves until Sunday evening. Last year for Christmas my mother gave us a gift certificate for a one night stay at a B&B in Lancaster, plus a Shady Maple gift card (yum!). She also keeps the kids! We'll be using that and exploring around Lancaster & Lititz and just enjoying our time together. I'm looking forward to the peace, quiet, and just ... being.
