I visited the neurologist at Hopkins and have a game plan - finally!
The doctor thinks my condition is caused from either the radiation or some sort of autoimmune thing. They are leaning towards radiation causing everything but are still waiting for some tests to rule out the autoimmune option.
In the meantime I will go on high dose IV steroids for 5 days (1000 mg per day). This will hopefully stop the progression of all my symptoms. The best case scenario after the steroids is that my body thinks it has plateaued and then we can work over time (talking years) to regain almost all my mobility. I will not get back to 100% but close to it.
If it does turn out to be the autoimmune thing they have treatments for that as well and same scenario.... that I will over time get back to almost 100%.
So Dave and I are ecstatic for the good news! My worst case scenario fears of a wheel chair are gone and I see the light at the end of the tunnel. Yes this is going to be a journey and will take time but just knowing that we are on the road to a better me is great.
Next week I might be a bit of a nut on the steroids. I am also dealing with these symptoms and trying to manage the little z's - always a challenge. But all in all still just flying high that they keep saying the don't think it's cancer. Life is good.
Have a wonderful weekend.