My New Doctor

I have a new doctor - her name is Dr. Lynch. She works at KU and
see's only MS patients. I thought she would care more about me than my current doctor and I think I am right.

I went to see her yesterday afternoon and she was very thorough in her testing. One of the things I like about her is that she listens to me. I have been telling my current doctor since October last year that I thought I was getting worse. It started with subtle things that I noticed and progressed from there. He was sure it was all in my head and said I needed a better attitude. He said I have RRMS (relapsing remitting MS) and that's it...no ifs, ands, or buts about it. That's what he diagnosed me as having and it's what most people have. They get an 'attack' but then it goes away (into remission) for a period of time before coming back. Sometimes it can go away for years and you'd never know the person had MS unless they told you. Anyway...he would cut me off when I said things and I felt stupid when I saw him. I thought, if I have a cronic illness am I not supposed to like my doctor and not feel stupid when I talk to him? I thought, I'm not going to tolerate this, so I made an appointment to see Doctor Lynch. The earliest day I could get an appointment was three months away in April but I made the appointment and looked forward to it with anticipation.

She reviewed my MRIs and records from Dr. Arkin and said it was peculiar. She said I'm not the normal MS patient because my brain only shows lesions in the brain stem. She said my balance is worse than it should be for a person my age and then she said she thinks I might have PPMS (primary progressive MS) because my symptoms have just gotten worse over time and I have never gone into remission. She thinks I should get an MRI of my neck because usually people with PPMS have more lesions in their neck than their brain.

I was relieved to hear her mention PPMS because my other doctor would never entertain the idea but I have felt more like I have PPMS than RRMS. There is no treatment nor medication for PPMS and it is more rare. Only about 10% of people with MS have PPMS. She did say however that sterhoids might help alleviate my symptoms for a time. I'm going to the hospital tomorrow for a sterhoid treatment and to have her monitor me. She was surprised that I have never had sterhoids...I have to admit I am surprised myself since that's usually the first treatment a person has. She said sometimes the sterhoids make a persons blood sugar go high and if that's the case, she will keep me in the hospital for five days, to receive all the sterhoids, instead of just one day. She said people with PPMS usually do well with sterhoids for about three weeks, then it starts to wear off and they have to get a treatment about once a month.

She doesn't think Tysabri will work for me since it's more helpful for people with RRMS. I am relieved to hear this because I really don't want to take a chance in getting that very dangerous brain disease (PML) which could be a side-affect from taking the medication.

Why am I writing all this in my blog? 1)I don't want to explain it to everyone who cares about me. I can simply say "read my blog." 2)I am trying to acknowlege my new self and therefore am posting this to the world 3)For some reason, I feel better writing it all down.

I don't know how quickly this is going to progress but I feel like I need to have a good attitude. I've heard attitude makes all the difference in whether or not a person with a chronic disease does well, and I thought I should have a good attitude too. Not only will a good attitude help me but I think it will also bring comfort to my family. I plan on living a good happy life and I want everyone to know that. I am content.

I remember what a friend said to me one time in church. I said to her one day when I was feeling sorry for myself, I'm fatal. She looked at me and said "honey, we're all fatal" that makes me laugh because it's true! We're all fatal, so why not enjoy life now. I smile as I type this and look forward to enjoying my life.