Medical bills for my husband Mike's paralysis

In mid-July of this year my husband Mike woke up one day with numbness in both of his legs. It wasn't severe and he has arthritis very bad, so he thought it was perhaps related. Two hours later he collapsed, and his legs were completely paralyzed. We rushed immediately to St. Joseph's Hospital. The next day the neurologist made the assumption he was suffering from Guillain Barre Syndrome and started him on five treatments of intravenous immunoglobulin (IVIG). After 5 days his condition got much worse. The paralysis from his legs spread to his upper chest and he had no feelings or sensation from his chest down. They then ruled out Guillain Barre Syndrome and decided on a different course of treatment. He was transferred to Franklin Square Hospital and was then given seven doses of plasmapheresis which basically removes the blood from the body, cleans out any toxins and the blood is reintroduced to the body. 

The reason for this treatment was the assumption that it was indeed an auto immune disorder, although to this day no one knows what it is or how it got into and is affecting his body. Test results that were sent to the MAYO clinic were shared with leading hospitals like Georgetown. Hundreds of tests were taken and every single one came back negative. All they could agree on was that plasmapheresis might help. It wasn't until two weeks after these treatments that he felt any kind of change and that was in his torso but very insignificant. His legs were still completely paralyzed. He was then released and every one of his doctors had given up on him and sent him to rehab with no answers and no hope.

At the advice of a good friend he was introduced to another doctor, who has had similar cases and some insight into the possible cause of all this. Well, we're happy to say that with only three weeks of treatments with the new doctor Mike is showing great signs of improvement and now has hope that one day soon he will walk again. The legs are still numb and paralyzed, but it seems that with each treatment he is feeling things a little more than the previous treatments. It looks like things are changing for the better.

The problem is that because this was medically such a rare and unexplained disease, the cost to us has been staggering. Over three months in hospitals and rehabs, dozens of MRI's and CAT Scans. Despite my having good insurance, between hospital stays, tests, drugs and special services we are looking at co-pays of over $20,000. This does not include the changes we made to our home to accommodate his disability. We have installed stair lifts, modified the bathrooms, purchased and rented hospital equipment hired in home PT, OT and Nursing. Because he really needs 24-hour care and cannot even get to a bathroom by himself we had to hire a personal care nurse seven days a week. Insurance does not cover this at all and that cost alone is $1200 per week. On top of that, the specialized tests and treatments that have been helping are high and out of pocket as well, since insurance does not cover those.

A friend of ours who saw the staggering out of pocket cost for his medical copays so far and the cost of all the specialized treatments and in home care needed, recommended we do a GoFundMe. Mike was completely opposed to it, but after two weeks of me and several other people trying to convince him that this would give him a better fighting chance to be able to walk again, he reluctantly agreed. No one expected this tragedy, but Mike is a strong person, and no one better tell him he won’t walk again. But for Mike to overcome this unexplained paralysis and to walk again, we are asking for help.