Sorry for the delay everyone, but I have gotten quite the runaround lately. I finally had my steriod infusions on May 6th, 7th, & 8th. At first I was extemely wired and had bursts of energy. I still was losing my balance and feeling weak in my arms and legs. By Mother's Day, I began to experience, what I can only describe as a drug induced haze. Everything I experienced was a contridiction to another feeling. I was in a lot of pain, but everything felt numb. My vision was blurry, but colors and things appeared brighter and surreal. Every sound was amplified, but I couldn't focus on what was being said to me. As if people were speaking a foreign language. I felt completely overwhelmed and lonely. It was pure insanity. I likened it to some sort of side effect to the steriods since nothing else had changed. This lasted almost exactly 48 hours.
Then for the next three days I experienced extreme exhaustion. I slept as much as I could. On Thursday, May 14th I began to feel some improvements. I felt a little more "normal". This has only been a fleeting feeling, as it comes and goes. I still have been losing my balance, tripping and experiencing the weakness & numbness. Had some tremors over the weekend as well. So, not totally sold on the steriods yet, but they said the benefits may take longer to show themselves, so I am still giving the infusions the benefit of the doubt.
Once I see Dr. Beall on June 16th, I will question if the crazy, drugged effects are normal or not. Then we can decide if this seems to be the right choice for me. I have enough of my own issues without adding drug trips to the list. Brain haze is not a side effect I want to keep!
Tuesday, May 19, 2009
Thursday, April 23, 2009
Brain Wave
Hello everyone,
This blog finds me much happier than the last couple. I saw my neurologist, Dr. Beall today. I am happy to say that it went very well. He came into the room with a declaration about the researchers not seeing my lesions, stating that the study wants to see them 6 milliliters or larger and mine are 3 & 4 milliliters. He also said that he has been learning more about the drug for the clinical trial since he saw me last. He learned that the drug cannot be combined with any other treatments and he felt that may have been a bad move for me. "So this may have been a blessing in disguise;" was an exact quote.
He then examined me and still found weakness throughout my body. In my legs and feet especially. He noticed that my gait (style of walking) was off as well, including numbness. He asked about bathroom issues and I explained I was having trouble making it to the bathroom on time. I feel like a little kid who waited too long. Based on all this we have a plan of action.
He gave me a prescription for Vesicare for the bladder problems. I am starting steroids again (Celumedrol) as soon as my blood work and chest x-ray (Monday) come back clear. And he is starting me on an injectable MS drug called, Betaseron. I will have to give myself shots and someone will come to the house to teach me how to do that. The company MS Pathways is supposed to contact me to set that up. I am trying not to focus on the needle issue. Desperate times and all.
He is taking my latest MRI back to Saginaw with him to have his specialist look at the new films. He told me I was the first patient he did this with and since then he has been working with the specialist on other patients and has been successfully helping them as well. He said he has done this drug protocol with other patients similar to me. That most of his patients are back to "normal" within a month. That one of his patients has been symptom free for two years. A couple others who did become diagnosed with definitive MS, have had fewer and shorter lasting relapses. He is very optimistic for me. So am I.
Needless to say, I am very happy to become active in my treatment. I am hopeful that I could be showing improvements by my sister Shelly's wedding on May 30th. So fellow bridesmaids, watch out!! I may dance circles around you at the wedding!!! Maybe... We shall see, but no matter what my brain is waving the victory flag and being quite hopeful! Keep moving forward my friends. I will persevere...
This blog finds me much happier than the last couple. I saw my neurologist, Dr. Beall today. I am happy to say that it went very well. He came into the room with a declaration about the researchers not seeing my lesions, stating that the study wants to see them 6 milliliters or larger and mine are 3 & 4 milliliters. He also said that he has been learning more about the drug for the clinical trial since he saw me last. He learned that the drug cannot be combined with any other treatments and he felt that may have been a bad move for me. "So this may have been a blessing in disguise;" was an exact quote.
He then examined me and still found weakness throughout my body. In my legs and feet especially. He noticed that my gait (style of walking) was off as well, including numbness. He asked about bathroom issues and I explained I was having trouble making it to the bathroom on time. I feel like a little kid who waited too long. Based on all this we have a plan of action.
He gave me a prescription for Vesicare for the bladder problems. I am starting steroids again (Celumedrol) as soon as my blood work and chest x-ray (Monday) come back clear. And he is starting me on an injectable MS drug called, Betaseron. I will have to give myself shots and someone will come to the house to teach me how to do that. The company MS Pathways is supposed to contact me to set that up. I am trying not to focus on the needle issue. Desperate times and all.
He is taking my latest MRI back to Saginaw with him to have his specialist look at the new films. He told me I was the first patient he did this with and since then he has been working with the specialist on other patients and has been successfully helping them as well. He said he has done this drug protocol with other patients similar to me. That most of his patients are back to "normal" within a month. That one of his patients has been symptom free for two years. A couple others who did become diagnosed with definitive MS, have had fewer and shorter lasting relapses. He is very optimistic for me. So am I.
Needless to say, I am very happy to become active in my treatment. I am hopeful that I could be showing improvements by my sister Shelly's wedding on May 30th. So fellow bridesmaids, watch out!! I may dance circles around you at the wedding!!! Maybe... We shall see, but no matter what my brain is waving the victory flag and being quite hopeful! Keep moving forward my friends. I will persevere...
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