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...
Thursday, April 23, 2009
Tuesday, April 7, 2009
Mind Over Matter
Hello Everyone, Well it's a new week and a new chance to move forward physically and mentally. Last week was definitely upsetting and frustrating, but that is in the past now. I need to prepare for my next appointment with Dr. Beall on April 23rd. He will be ready for the next step for me and my treatment plan. Keep moving forward!
I know some of you are worried about me and some of you are also a little confused. Please remember that this was NOT a second opinion. This was a suggested path of treatment for me AFTER I received my diagnosis from Dr. Beall. He told me from the beginning that he felt I was a good candidate for this clinical trial, but that didn't mean I would definitely be accepted. I did not meet the criteria that the researchers want for the patients participating in the trial. So now we see what other avenues Dr. Beall wants to take with me.
As I said before everything happens for a reason, so I have been trying to see why it took so long for me to get my answer. One thought I had was maybe with all the delays and problems they had just getting me screened for the trial, maybe that is how the whole trial will go under this particular researchers watch? Maybe that would have proven more harmful than beneficial for me? If the whole trial was going to continue like this then maybe this is for the best. I certainly wouldn't have seen that if I had not been given the run around for the past four months. Maybe not, but it's a theory.
Maybe it will be more beneficial for me to try this drug once its been approved by the FDA and all the "bugs" are worked out of it? Maybe it will have no benefit to me at all? Who knows? But I have accepted that this is not the path for my medical treatment and am hopeful and ready to begin whatever Dr. Beall suggests. Lord knows I've been patient!
As far as how I've been feeling lately, I have been shaky and clumsy. Still really tired and napping alot. No double vision the last couple weeks, just blurry & cloudy spots. Pinpoint head pain has been really prominent. It's not really a headache. It just feels like different spots on my head get sharp, throbbing or stabbing pain. It is really bad when my mind gets foggy. That definitely has been more bothersome lately. The foggy brain and inability to focus or concentrate. That's been fun because since the Detroit papers have slowed their delivery we took over delivery for all the other papers like USA Today, Wall Street Journal, etc. Trying to keep all that straight at 3:00am and make sure everyone gets the right paper makes my head hurt. The first few days I had to fight from crying over the frustration. I just talked myself down and thought "go slow and it'll all work out". It did, but six different papers...WOW, too much!
I don't know if I mentioned it, but I bought a cane. I don't need it all the time, but it definitely helps if I need to walk alot or far. Especially at the end of the day when I am most tired. It helps keep me steady when my balance is off and when the numbness in my right leg is bad. It certainly makes me feel more confident when I have to walk with Paul to pick up Kristina from school. I am less afraid I am going to fall. When I do feel like I might fall, I at least feel like I am helping myself. I don't use it at home or on my route, that seems pointless. It really depends on the kind of day I am having, but I had read about this in the book "Women Living With MS". Many women said that once they started using it they hadn't realised how much energy they were wasting just struggling to keep upright. They weren't kidding. Most times when I am walking without it, no one would ever know, but I am repeating in my head over and over "Don't fall. Don't fall. Don't fall." I even picked out a pretty one. It's a soft green with white flowers. Hey! If you have to have it, then have it on your own terms!
So I hope you can tell I am attempting some optimism here. This will not break me. A little mind over matter. I may be a person living with CIS/early MS, but I am living!!
Love to you all, Tammy
I know some of you are worried about me and some of you are also a little confused. Please remember that this was NOT a second opinion. This was a suggested path of treatment for me AFTER I received my diagnosis from Dr. Beall. He told me from the beginning that he felt I was a good candidate for this clinical trial, but that didn't mean I would definitely be accepted. I did not meet the criteria that the researchers want for the patients participating in the trial. So now we see what other avenues Dr. Beall wants to take with me.
As I said before everything happens for a reason, so I have been trying to see why it took so long for me to get my answer. One thought I had was maybe with all the delays and problems they had just getting me screened for the trial, maybe that is how the whole trial will go under this particular researchers watch? Maybe that would have proven more harmful than beneficial for me? If the whole trial was going to continue like this then maybe this is for the best. I certainly wouldn't have seen that if I had not been given the run around for the past four months. Maybe not, but it's a theory.
Maybe it will be more beneficial for me to try this drug once its been approved by the FDA and all the "bugs" are worked out of it? Maybe it will have no benefit to me at all? Who knows? But I have accepted that this is not the path for my medical treatment and am hopeful and ready to begin whatever Dr. Beall suggests. Lord knows I've been patient!
As far as how I've been feeling lately, I have been shaky and clumsy. Still really tired and napping alot. No double vision the last couple weeks, just blurry & cloudy spots. Pinpoint head pain has been really prominent. It's not really a headache. It just feels like different spots on my head get sharp, throbbing or stabbing pain. It is really bad when my mind gets foggy. That definitely has been more bothersome lately. The foggy brain and inability to focus or concentrate. That's been fun because since the Detroit papers have slowed their delivery we took over delivery for all the other papers like USA Today, Wall Street Journal, etc. Trying to keep all that straight at 3:00am and make sure everyone gets the right paper makes my head hurt. The first few days I had to fight from crying over the frustration. I just talked myself down and thought "go slow and it'll all work out". It did, but six different papers...WOW, too much!
I don't know if I mentioned it, but I bought a cane. I don't need it all the time, but it definitely helps if I need to walk alot or far. Especially at the end of the day when I am most tired. It helps keep me steady when my balance is off and when the numbness in my right leg is bad. It certainly makes me feel more confident when I have to walk with Paul to pick up Kristina from school. I am less afraid I am going to fall. When I do feel like I might fall, I at least feel like I am helping myself. I don't use it at home or on my route, that seems pointless. It really depends on the kind of day I am having, but I had read about this in the book "Women Living With MS". Many women said that once they started using it they hadn't realised how much energy they were wasting just struggling to keep upright. They weren't kidding. Most times when I am walking without it, no one would ever know, but I am repeating in my head over and over "Don't fall. Don't fall. Don't fall." I even picked out a pretty one. It's a soft green with white flowers. Hey! If you have to have it, then have it on your own terms!
So I hope you can tell I am attempting some optimism here. This will not break me. A little mind over matter. I may be a person living with CIS/early MS, but I am living!!
Love to you all, Tammy
Wednesday, April 1, 2009
Brain Failure
Well today I have bad news. I wish I could say it was an April Fool's joke, but it is not. I will not be doing the clinical trial. I found out yesterday afternoon that I do not meet all the requirements necessary to participate in the trial. My neurologist can recommend me as a candidate, but the study researchers perform their own tests and make the final decision. Needless to say, I am devastated.
I know "everything happens for a reason". I have to believe it, but I am having a hard time understanding why I put my health and treatment on hold for almost 4 months of delays only to be denied what I was waiting to do. One day I am sure I will see why. I need a few days to be sad and then get up and start to move forward again. This will not break me. I feel broken today, but I will push thru...I have to...
I will see my neurologist on April 23, 2009. From there we will discuss the other options he mentioned before. He may want to repeat steroids or try a different avenue. I will let you know as I know. So as for now, this blog will remain what it has been; a blog updating you on my health. It will not become the diary of my clinical trial, just a personal journey thru trial and error.
Please keep me in your prayers. I need to find my strength from all the love and support from my family and my friends. I can't survive without it. My brain may be faulty, and this trial may have failed me, but I will not fail myself. Brain failure....? Brain reborn...? Brain recharge...? We shall see...
I know "everything happens for a reason". I have to believe it, but I am having a hard time understanding why I put my health and treatment on hold for almost 4 months of delays only to be denied what I was waiting to do. One day I am sure I will see why. I need a few days to be sad and then get up and start to move forward again. This will not break me. I feel broken today, but I will push thru...I have to...
I will see my neurologist on April 23, 2009. From there we will discuss the other options he mentioned before. He may want to repeat steroids or try a different avenue. I will let you know as I know. So as for now, this blog will remain what it has been; a blog updating you on my health. It will not become the diary of my clinical trial, just a personal journey thru trial and error.
Please keep me in your prayers. I need to find my strength from all the love and support from my family and my friends. I can't survive without it. My brain may be faulty, and this trial may have failed me, but I will not fail myself. Brain failure....? Brain reborn...? Brain recharge...? We shall see...
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