It's been two months since I was released from Chicago Northwestern Hospital after resetting my immune system. The benefits of stopping the autoimmune attack on my central nervous system are remarkable. With no MS drugs at all, I'm not needing a wheelchair anymore, my vision is normal rather than double or triple, I have significantly less nerve pain and my incontinence symptoms are gone. And fortunately, I have avoided contracting any significant infections during the immune system reset. Blood tests are showing that my white blood cell counts have settled in at the normal range.
Walking gets incrementally better every week, but is still a challenge. Yesterday, I walked down to the mailbox, then to my car to go shopping. Didn't realize I'd forgotten my cane until I got to the car. I have balance and muscle spasm issues, so still need the cane to negotiate rough pavement, ice and crowds. Walking around the condo is my cane-free safe zone, but around town is my equivalent of into the wild. I'm now seeing a physical therapist to address my balance and leg coordination issues. The exercises she gives me have pinpointed the specific weaknesses that need work. Goal is to be rid of the cane by mid-summer.
So, healthwise, things are looking good. What's not so good is that it's appearing more and more likely that I'll be paying for the entire HSCT treatment myself without coverage from my insurance company. Total bill is $166,000, of which I still owe $41,000. Ouch. But it was my money or my life, so I have no regrets on my decision to move forward. That doesn't mean I'm totally giving up on my insurance case, though.
After three appeal rejections from the insurer, I still had great hopes that I could appeal successfully through the Minnesota Department of Commerce with a strong case that HSCT is a proven treatment and was a medical necessity for me. But it turns out that my insurance is part of a "self-insured group health plan", and Minnesota has no authority over such plans. They referred me to the US Department of Labor, which then advised me to go back to the Minnesota Department of Commerce. Ack! I had been caught in a bureaucratic know-nothing loop.
In the end, I'm back to square one, having to deal directly with my uncooperative insurer. They may select what is called an independent review panel, but based on my experience with this insurer so far, I have no confidence that this will be an unbiased selection. I am currently seeking referrals for a good patient advocate lawyer to represent me. If you know one, let me know. I'll be making a selection soon. Thanks.
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