Medical Update 1-20-2010

Wow – it’s been 5 months since I last wrote!

Medical Update

So, I haven’t been a good blogger, for any number of excuses but the biggest reason for not blogging has been the fact that my hands began to cramp, be in pain, and frequently go numb from September onward. Things have improved lately – there is intermittent pain and numbness if I don’t get enough sleep or if I am really stressed out or spend a lot of time doing activities that involve my hands, but it’s not waking me up at night the way it was from September, October, and mostly into December. The pain was so excruciating I took to wearing fancy neoprene compression gloves just to help during the way, and wrist splints at night, but the pain would be so intense it would prevent me from sleeping or wake me up from sleeping, and frequently my hands would shake and spasm on their own.

The weird thing is that it wasn’t carpal tunnel, because the pain and numbness was worst in my ring and pinky fingers of both hands. There were days that my hands would be so painful, so weak, and so numb that I couldn’t squeeze shampoo out of the bottle. I would hold the bottle with the heel of both palms and squeeze the shampoo directly onto the floor of the bathtub and wipe it up with my palm to put in my hair. Pretty sanitary. The neurologist checked me out in September when it first started, and he said, “Welcome to your life with MS”. Awesome bedside manner. Other than that, he had no explanation.

I’m not sure when things started to improve – I took almost 2 weeks off of work for Christmas to relax in Cheboygan and I got a lot more sleep than I ordinarily do and had a lot less stress, so that seemed to help. My hand spasmed quite a bit in church on Christmas, but I can’t remember many occasions where I had quite as many problems since then. Like I said, the hands aren’t 100% - I still have a hard time holding individual coins and placing them into the washing machine, or holding a pencil, but things are definitely improved. So I guess that means I am remitting in this relapsing/remitting disease. Unfortunately with each relapse or onset of different symptoms, there are usually scars and so even when I remit I am going to a slightly worse starting point. So with each attack or set of symptoms, even when they resolve they still leave scars and residual problems. Nothing will ever go back to completely normal once it has started to be abnormal.

Weirdly enough, while my stress level improved over Christmas, there was still a lot to be stressed about. One of those things was that my company announced on December 17 that they were changing insurance carriers to one that would be more expensive with less coverage. On December 29th I heard from the specialty pharmacy that handles my MS medication (the injectable stuff), and they said I would have to pay $1225 per month until I met my insurance deductible. I got on the phone to everyone and their brother to sort this out, and while the drug company was trying to find out if I was eligible for a co-pay assistance program, I managed to get my neurologist to order an MRI for me. As Steve is also on my health insurance, our out-of-pocket deductible was $2400 so it’s not easy to meet that kind of a deductible. And with our insurance, not only are prescriptions not covered until the deductible is met, but no prescriptions purchased out-of-pocket count toward the deductible. Ridiculous. So hopefully my MRI, the neurologist visit I have scheduled for this Friday, and Steve’s recent doctor visit and probable MRI on his knees will get us to our deductible in order to have my prescriptions covered. Unfortunately, even after our deductible is met, we will still have to pay 20% of our medical bills out of pocket. Up until a limit but I can’t remember what that limit is. But it sucks.

In the meantime, I am finally reading all the research and books that I have obtained over the last year on MS and exploring alternative options – considering things like diet to maintain health and different types of exercise. There are other options for symptom management, especially my pain management, like acupuncture, but my crappy health insurance won’t cover it and with the sheer dollar amount that we’re going to be paying for medical bills with such rotten coverage, I can’t afford unless a student tests on me. Without that, forget alternative options that cost money. But diet and exercise I can change….and that’s what we’re doing right now.

FYI – in terms of Steve’s medical bills – I sent him to the doctor to try to meet our deductible quicker and as he has 2 bad knees, one from Osgood-Schlaughter’s disease and one from a torn ACL, he might be able to get an MRI to see if there’s anything that can be done to help him out. At this point, we just need to fill that deductible.

So that’s the medical update.