Hello Dr. H. - It's So Nice to Meet You!

I have been amazed lately. Usually I am an open book. Usually I run and tell my family everything I heard at the Dr.'s office. That has not been the case going through all of this. After each visit, there is so much to process. So much to think about. So much to figure out. So much to sink in. I have literally come home from each of my appointments a little numb. There is definitely shell-shock with this whole thing. It has taken me sometimes til 7 o'clock in the evening to even call my Dad and fill him in. The first Neurologist I went to was one I used to work for. I felt that he would give me the best care since we knew each other. However, that was not the case. I like him as a person, but as a Dr., I did not love his bedside manner or the way he ran things medically. Never did he show me or review any of my test results. He walked in to the appointment, sat down, told me what the results were and gave me the next set of instructions to follow. The feeling Trav and I always had, was if we didn't do what he suggested, then we were somewhat stupid and would have a hard time with all of this. I feel it was a blessing he wasn't on my insurance and that it became monetarily important for us to go to another Neurologist with this being a long term thing. Otherwise, we never would have met Dr. H., and never would have been given the hope and new insight he gave. I loved meeting with him. He spent over an hour with us, talking everything out. He even got his laptop and for the first time ever, showed us my MRI's and what everything looked like. Finally there was proof that I really did have lesions on my spinal chord. He explained everything in full detail. (When I asked him if my brain was cute, he answered "Definitely!"

I knew then, we would get along quite nicely!)

(I couldn't get the angle quite right to show all 3,
but those are the lesions.)

He listened to my whole story from the very beginning. Dr. H. did his own Neurological exam on me. After we went over all of that, he turned to us and said, "I'm not 100% convinced you have MS!" What? Dr. V. said it was time for the daily shots. Dr. V. said no more babies. Dr. V. said if Dr. H. didn't agree with his findings, it was time to find another Doc. Dr. H. told us that if it weren't for the 2 major red flags I have, he would rule out MS all together. He said my brain was perfect, my blood work was perfect. I passed the neurological exam with flying colors. I was healing from my numbness really, really well. But, the fact of the matter is......I have 3 lesions on my spinal chord, and I have O-bands in my spinal fluid. If it wasn't for those two things, he would wipe my slate clean. He said that the number of O-bands I have are EXTREMELY high - I have 9. That is not good. That is a huge indicator that MS is a big possibility. However, he gave us some insight that there are other things out there that can present themselves as MS. The one he is leaning towards for me is something he calls A.D.E.M. (This is where I sound really smart when I say this out loud, so I like to say it often!!) Acute Disseminated Encephalomyelitis. This is basically an autoimmune disease as well, that presents itself like MS in the fact that it is also a demyelinating process. It attacks the myelin sheath that covers the nerves. It can be caused by a simple cold, or a vaccine - by the infection spreading into the spinal chord. As we talked about my history, he thought to bring this up because I had the H1N1 shot in November. After about 2 weeks, I developed a horrible sinus infection that spread to my lungs. I was on antibiotics for 10 days. As soon as I finished, it came back full force til the middle of February. Those were some major points of interest to him regarding this A.D.E.M. The only problem is, there is no way to know for sure if it's MS vs. the other for quite a while. We need to watch and see if I have any more attacks. Follow-up MRI's need to be done in a few months to see how my lesions are doing or if there are more lesions coming on. If I continue to be free of lesions and attacks, then he will lean more to the A.D.E.M. If more lesions and attacks are present, then he will be able to fully rule that out and say it is MS. Because of the lesions and high number of O-bands, he is keeping me at the possible MS diagnosis. He says those two things are evidence I am heading there. He gave us great hope though in telling us that it is his opinion that I should not let this disease run my life. If I have hopes and dreams, achieve them. Don't wait around for this disease to take them from me. When we asked what his opinion was for another baby, he said to go for it! I cried. He was saying everything we have been wanting to hear. He brought back all of the hope that had been taken away when the "Death Sentence" was first given. Before, dreams were being taken away. Now....we were told to not only live our lives, but to love life. He explained that the two things leading scientists closer to a cure for MS were Stem Cells and Women's Estrogen. He explained that that is proof enough that pregnancy can be a help in the fight against MS. He said that having a low immune system and higher levels of estrogen helps keep MS attacks away. Studies are showing that many women feel their best with MS during pregnancy. The only concern is that afterward, the chance of MS attacks are 40% higher. So, the way we left the appointment is: go ahead and try for a baby. If I'm not expecting by July, MRI's of my brain and full spinal chord will be done again to see where I'm at. If I am expecting - Great! The MRI's will be done a few weeks after delivery. Dr. H said he does not jump at the chance to put people on the shots. The side effects of depression, flu-like symptoms and injection site infections are sometimes worse than the actual attack. He feels like they are very helpful to people in fighting MS, but he will wait for me for a while to see where I am headed. He was amazing and a complete answer to prayer. The positive outlook he had on this was all I needed to lift my spirits a little. I will say though, I was very heartbroken when he wouldn't pass me off to go on the Pioneer Trek this summer with my YW. I was really looking forward to that. He told me to get serious about what is going on inside my body. The problem is, I have been feeling better, so in my mind.....I am fine and can conquer anything I want. He explained that the lesions on my spinal chord are exacerbated by heat. If I get over heated, or over-exert they can get larger and cause more damage. I asked if I could just stay back with the food committee and cook, and he said that it was serious enough, that just being outdoors in the heat could cause problems if I couldn't get somewhere to cool my body temp. down. He looked me straight in the face and told me it was serious enough it could cause paralysis. The point was driven home and I have realized my new limitations. This is all new territory for us. I have good days and bad days. For the most part, I am happy and trying to just take care of my family. It has been nice the last week or so since the appointment, to not think so much about myself anymore, or to worry so much about this. It has been all-consuming that's for sure. But, I have felt all along like Dr. H does......I will not let this take my life from me. To the best of my abilities, I won't let it win.