movin' and groovin'

A week or so ago I FINALLY made an appointment for Matty with one of the doctors that Brian Ahlstrom (Dr. Ahlstrom and Matt Ahlstrom's dad) suggested to us. His name is Galen Mitchell (sounds like gay-lin) and he's a UPMC/Pitt guy. First available appointment is in April, which frankly is sooner than I thought we'd be able to get him. The other guy Brian suggested at UPMC/Pitt is Rock Heyman (sounds like hymen.) He didn't have an available appointment until September. I'm glad we're going to see someone else. First of all, we shouldn't have dawdled this long about getting a 'second opinion.' Although I'm sure the diagnosis won't be different, and I'm very very confident that Matty is on the right meds, it will be good to go see another doctor. Hell, it'll be good to see a doctor at all. Matty saw his neurologist one time - when the tests were ordered. In fact, it wasn't until AFTER the PA gave us the diagnosis that anyone in the office had actually seen his MRI - they diagnosed him on the report write up and on the lab results from his spinal. I have to give credit where credit is due here though. Matty wanted his results as soon as possible (and rightfully so.) He didn't want to wait until the actual doctor was available. We have his 8 week follow up appointment this friday 1/30 where again, we will see the PA not the doctor. No biggie, he's not due for another MRI until May or so. Still, I want Matty to see and talk to a doctor fer chrissakes!

The two guys at Pitt, and another one at AGH, Dr. Thomas Scott are the 'MS guru's' of Pittsburgh. Scott has done a lot of work with the avonex folks (matty is one avonex.) The two at Pitt, however, are not only more convenient, but as Brian said, they're also closer to the research - they see patients and teach and probably oversee research. All three of these guys certainly have their finger on the pulse of MS research and medications.

I can't believe it's only been 8 weeks! (I started writing this on 1/8 and didn't bother to finish it until now, 20 days later. oops.) Ok, not exactly. Matty was diagnosed the Monday before Thanksgiving, so it will really be closer to 10 weeks. Still, it feels like it's been much longer. Thankfully, I think that's because we were quickly able to get back to 'normal' so to speak. I can't honestly tell you whether or not I even think about it everyday. I must on some level, but I'm not consumed by it. Neither is the mutant. He's been basically symptom free for at least a month now. Actually, soon after starting the meds he could tell a difference. Is this psychosomatic? Perhaps in part - but so what! The power of the mind is amazing, and knowing what was going on with his body helped decrease Matty's stress level, which I believe directly affected the frequency and severity of his symptoms.

We are also lucky because it seems he was diagnosed "early." He was probably symptomatic for less than a year. We've both read stories of people who were unknowingly living with MS for 10 and 20 years before being diagnosed. In the past, before MRIs and before there was so much knowledge, people would seek to have their symptoms treated and often didn't know until they were severely affected or disabled that they had MS. So we're lucky.

We heard from my soon to be brother in law (that story is for my next post!) that a friend of theirs, who has been on avonex for 5 years, may be taken off of it after her next MRI. So far, the meds seem to have not only stopped the progression of the disease, but also actually reversed some of the damage. I look forward to talking to the doc about that as well.