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Multiple Sclerosis: A new chapter

A New Chapter Begins


     After writing my first blog about multiple sclerosis I had intended on writing my experiences with this disease in a chronological order.  And just as I was about to sit down and write the next edition I got a phone call informing me that I had been approved for funding for Copaxone therapy.  And though the idea of taking daily injections does not appeal to me I guess you do what you have to do.  Copaxone was the first FDA approved treatment for (RRMS) Relapsing/Remitting Multiple Sclerosis.  It is considered to be the safest of all the MS drugs on the market at this time, as it has been studied for nearly twenty years, with very few serious side effects.          

     However Copaxone is not the first MS modifying treatment that I have used.  Five years ago I was part of a clinical trial for Betaseron which is an approved drug as well but the clinical trial was trying to determine if a larger dose would be more effective then the already approved dosage.  It was a double blind study where forty percent of the patients got the normal dose, forty percent got the higher dose, and the remaining twenty percent were put on Copaxone as the control group.  I was assigned to a group and began my participation with high hopes.  The study lasted for two years and then I continued using Betaseron for another year after that.  At the conclusion of the study I was informed that I had been in the group using the smaller dose which in the end was fine by me because it was determined that the larger dose was no more effective then the smaller one in the treatment of MS.

     After those three years I asked my Neurologist to remove me from Betaseron all together as I was very unhappy with the overall benefit that I felt that I was getting.  I had been told that I might not see any improvement in my general and overall symptoms but that I should expect a reduction in exacerbations/attacks and their severity.  As far as I was concerned neither of those outcomes happened though I was promised a copy of my personal study results which now two years later I still have not received though I admit to only half heartedly trying to obtain them, perhaps now I will so I can write about those results here. 

     I also should mention that I do a number of other things that are thought to perhaps slow this diseases progression.  I take between five and ten thousand units of vitamin D3 daily along with a fish oil tablet day and night.  When taking large doses of vitamin D always ask your doctor to add a vitamin D blood level whenever you’re getting other blood work.  It’s not a good idea to have a super high amount of vitamin D cruising around your blood stream however most people with MS have very low levels to start with.  Even at the higher dose that I take my blood levels have remained right at normal.  And I take the statin drug Lovastatin which some studies suggest might have a positive effect on MS though I also have a borderline high cholesterol level which is what it’s prescribed to treat in my case. 

     And then finally, I also was put on Lisinopril by my doctor about a year and a half ago for the treatment of borderline high blood pressure.  Lisinopril has also been mentioned in a small study as possibly having a disease modifying effect on multiple sclerosis.  And what I will say here is since being on the Lisinopril my flare ups have been much less severe then they were at any time in the past eleven years since I was diagnosed.  I won’t swear it’s the Lisinopril, it could be that my disease might just be transitioning into a secondary progressive stage which is the next, albeit slower, level of nerve degeneration after RRMS.

     In the weeks and months ahead I’ll see if I can catch you up to speed on how I got here over the past eleven years as well as keep you informed about my progress after I start on the Copaxone therapy.

     Please remember, if you have multiple sclerosis, never give up or give in to this disease.  We will beat it, have faith!





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13 thoughts on “Multiple Sclerosis: A new chapter

  1. I just hit your blog. My grandfather Malcolm Goodenough had multiple schlerosis. He was from Northfield, Vermont and I never knew him, because he died when my mother was 14 years old. I am so sorry for your loss of health. My grandfather Malcolm was a beautiful, tall, dark haired man with friends and he of course the pictures of him he was young looking. I think that there is one picture of him with some fishermen smoking and they are nice looking guys. Some times I wonder if that is why I started smoking. He was a local pilot, flew his own plane and he also was a ground solider in Italy for the US during WWII.

  2. I have heard that about vitamin D, that in large doses it can be harmful, where as with the other vitamins it really does not matter how much you have in your system, because you will just pee any excess out.

    • Thanks Jessi for your comments. Actually smoking is also one of the environmental areas that research is looking at when it comes to MS. I guess a lot of us who have MS either do, or used to, smoke. I quit about sixteen years ago before I was diagnosed. I appreciate your concern that’s very sweet. I feel like so far that I am one of the lucky people because my disease seems to be progressing at a very slow rate.

  3. I quit smoking a year ago. I have a little boy so that makes it so that I will probably never smoke again.

  4. Well, you just sound very brave. My mother and aunt used to tell me stories of how my grandfather was bed ridden for 14 years in a hospital bed and he got up once in all of that time, because a nurse said that he could go out and fly his plane. The VA hospital that he was in looks like an old, creepy brick mental hospital. I am sure that it was not, but I think that treatment of ms has come a long way.

  5. Well, I was thinkin’ of ya. Didn’t look like you had much for comments.

  6. Harley Schiebel on said:

    MS treatment is still not 100% successful. But with the advent of modern stem cells, i think in the near future we would be able to cure it permanently.*”,,:

    Thanks again

    • Thank you for your thoughts and reading my blog. I have a feeling that I will be writing a lot more about MS in the near future and hopefully it will be positive thoughts. If you have any thoughts on other places where I could blog/publish my little writings Harley, I would be most receptive! Thanks again.

  7. Amado Zwiefelhofer on said:

    Multiple sclerosis symptoms may be single or multiple and may range from mile to severe intensity and short to long in duration. :

    Hottest blog post on our very own blog site

  8. Shantelle Faught on said:

    Multiple sclerosis (MS) is a disease in which the nerves of the central nervous system (brain and spinal cord) to degenerate. Myelin, which provides a covering or insulation for nerves, improves the conduction of impulses along the nerves and also is important for maintaining the health of the nerves. In multiple sclerosis, inflammation causes the myelin to disappear. Consequently, the electrical impulses that travel along the nerves decelerate, that is, become slower. In addition, the nerves themselves are damaged. As more and more nerves are affected, a person experiences a progressive interference with functions that are controlled by the nervous system ,

    Head to our very own web blog as well
    <. as vision, speech, walking, writing, and memory.

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