After five years, I have finally been diagnosed with MS. It was a ridiculous and difficult journey. I am happy to finally have answers, but it seems to have opened up a whole new level of trouble. I start Copaxone soon. I was just informed that our insurance has approved the medication and that they will ship it soon. I am nervous about doing the shots. I know I'll get used to it fast, but it will be good when it's here. I spent 10 days in the hospital with a massive flare-up. I went into the ER with severe tremors that looked like a seizure. I spent five days at Cenntennial where they did and MRI that showed new and old lesions on my brain. Based on the changes in my MRI they decided that I have MS. I was started on Solumedrol, and responded well. Then they transferred me to Sunrise hospital, which I will never return to. They did seizure monitoring there and I hated the whole experience. To top it all off, I do not have seizures, and the monitoring was mostly unnecessary.
Prior to these visits, I had to go to UCLA and the Lou Ruvo Clinic/Cleveland Clinic and see several specialists. The specialists told me I didn't have seizures, and that while I had all the symptoms of MS, but did not have the severe brain changes that would indicate a need for treatment. I don't know why that changed, but it did only one month later. Shaking all over is really scary. I can't stand it when it starts, and it is probably something I will deal with for a long time. I also now have the option of having a home nurse coming to my home for flare-ups to give me the high dose steroids via I.V. It is a lot of changes. In addition I have adrenal, and hormone issues, and my heart did weird things during this flare-up which suggests that I probably need to be monitored, if not have a pace maker put in. I am worried that my hear will slow down too much at night, and cause a problem.
Damon is amazing, but totally stressed out. He has had to take over everything, which isn't easy. I wish I could help him, but am too weak and sick still. It should take 3-6 months to see if the Copaxone works. In the meantime, I am a stay-at-home mom to a kid whose in school all day. Our finances are a mess, and we are really struggling everyday. I feel worst for Damon, and am worried about Benjamin. I sleep a lot during the day but cannot sleep at night. It's annoying to not be able to sleep at night, and my doctors are working on it.
Mostly, without my work, and other pursuits, I feel useless and bored. I don't like being weak and sick, and hope that I can recover more. I am weak from the hospital, and am working to regain my strength. It will take time, but we'll get there.