Wham Bamm What MS
I was diagnosed with Multiple Sclerosis June 20, 1998. They confirmed it July 31, 1998 on my first anniversary. To this date I am a walking talking miracle; I think I have been on almost every drug known to MS except for the G one. Side effects I have had a few thousand. Emotions that run the gambit but I am still standing for the most part. Still married technically, well we separated two years ago and frankly neither one of us has pulled the plug.
I have had some of the best and worst doctors. I was lucky that my MS was discovered in Texas and then sent two hundred miles away for confirmation by the head of neurology at Ft Sam Houston. Yes you guessed it, I was a military wife at the time. When it first started I had driven 4 kids from Ft. Hood, Texas to Warner Robins, GA all under the age of ten, talk about stress! It was also June in the South. Hot, humid and cranky we all arrived but my back was doing spasms, I mean go figure 17 hr trip 4 kids, I was lucky I was still sane. Then my parents and I took 3 of the 4 kids to Disney World in June. Yes, I was insane, my back still hurt and my legs started going numb. No big deal I must have really pinched my back. When we got back from Disney World, Epcot and Animal Kingdom, I dropped all the kids off with their respective other parents, blended family that we are, and proceeded to drive the 17 hour trip back.
Cell phones were not that common back then. My God, I wish they had been because driving a stick shift truck with numb legs, it is a miracle I made it back to Ft. Hood. But I did, then the numbness climbed all the way up my neck. I figured I just needed to rest it would be fine then the corset set it. I knew I was headed to the Drs., I was sent to the neurologist for an 8 am appointment, by 9 am I was in the hospital. I was thinking cancer had spread and was pressing against spinal cord and when they said MS I was like "wheeh wait what is Multiple Sclerosis".
The Dr. patiently did the plastic cord coating around an electrical line. I am sure most of you had heard it before his remedy steroids a massive amount and Avonex remember this was almost 20 years ago not many medications out there yet. So after massive amounts of steroids turning me into a cabbage patch kid and shots in my inter muscles was fine til I got feelings back in my legs. Then I was like oh hell to the no. Unfortunately, no one warned me about the side effects of steroids on a body. Long and short, I lost most of my top teeth and when we made it home back to Warner Robins, GA I went from the best Doctor to a Doctor who told me my MRI looked like I had scrambled eggs for brains and I may want to look into long term living center.
To hell with that, I went to find a new Doctor versed in Multiple Sclerosis so I started at the Shepherd Center with a nice enough Doctor but he was not all that and a bag of chips. Little did I know he was leaving the Shepherd Center, so my next appointment I walked in and this young Neurologist looked at me and asked me what my expectations were. I told him I have been wheel chair bound, fought my way out of that, blind for weeks on end, survived that and still managed to raise 4 kids. So if he could help me make it to see my kids graduate from school I would be ok with that. That was 16 years ago and thanks to the Shepherd Center and Dr. Ben Thrower. I can walk, talk, run support groups, no I can't do cartwheels but I can still conquer the world.
I will be forever thankful to that and for all my team that has seen me through this disease. I have been on Avonex, Betasaron, Copaxone, Rebif, IVIG. Tysabri, Methotrexate too. Chemo drugs that made me cry and pee blue, thought I was going to turn into a smurf on that one too. Pills that I thought would be my cure, but my liver had it's own issues with that one too. Run the gambit I have diligent and true Novantrone titrations every three months is where I am at now. A walking and talking miracle thanks to the dedication of my Doctors and Nurses at the Shepherd Center. Pain pill free for the most part when hydrocode's are not touching the pain but turn you into a loopy mess trust me it is not worth it I would rather power through.
Is everyday easy? I wish I could sugar coat it and say yes but with determination, will power, I will win this fight unless of course I am distracted by a shiny thing...a true MS joke. I hope my story empowers you to stay strong because much can be done if you just keep on trying.
How many specialists did you see before finding "The One"?