Week 8 living with MS - What Now?

Week eight is coming to an end and I had hoped today I would have a game plan on how to deal with my MS. I met with a neurologist this morning. I would have thought after two months of my tests being done that the person I saw would have looked over the results. He was looking them over as he walked into the door. The first thing he said to me was “Well it looks like you may have MS, oh yes here, it was determined you do have MS”. Then he went through all the tests to tell me what I didn’t have. Then he finally said he didn’t know that much about MS and I quote he said “not many people really do”. BUT you are a neurologist and they sent me to you. This was the first time in the past nearly nine weeks that I felt hopeless. In this moment when I needed someone to give me answers I had a doctor tell me I needed to do research on options. What the hell? I can’t even afford to pay for this visit and you want me to research options? “Maybe you would like to see one of the MS specialists, but they aren’t available for a while.” I would like to see someone that knows something. He then told me things he did know. The damage to my sight in my left eye is permanent. I have arthritis in my wrists and hands from the lesions in the spinal cord for my neck as well as paralysis in part of my throat. All permanent. Well I was never going to be a singer but I did need my sight and hands to craft. I guess I will keep going until I can’t. My other symptoms will come and go depending on flares some may get worse as time goes but they may not. There is no way to know, even I know that from my reading. He handed me a stack of medication options to look over telling me that most of them I couldn’t take because of preexisting issues but I might want to read about them. So you want me to read about a medication that might kill me or cause me to go blind early, this seems like a good idea to you? “Well call me in three days to see which medication you would like to take and then we will see you back here in three months.” What the hell just happened? I walked to the car holding all the booklets and pamphlets and I just wanted to scream but the really good happy pills that my GP gave me just made me laugh. The woman in the elevator thought I was insane, nope. I have a broken body, a broken bank account and a broken car. But it could all be worse. And I am luckier than many. So now my game plan is to find a new doctor which many people have already made suggestions. Then I will make sure that I know some options that may work for me before going into this. I will look at medication free options. And I will scream from every corner of this city to everyone who will listen, to donate to the MS Society to help find a cure and to help educate people about MS. We need more answers not more questions. And so on to week nine.