Multiple Sclerosis and Beyond

A few of my readers I believe are primarily interested in my posts about multiple sclerosis so I have created a new site just for and about MS. On this new site I would love for people who either have MS, or have an interest in it, to write and submit topics of interest to others, like myself, about MS. I really would like for this site to be interactive with as many contributors as I can get. I know that a number of people with MS don’t really want to bother with having their blog site/page but would like a place where they could submit their own personal story for others to share. And that is why I wanted to create this page. If you are currently one of my readers who cares about MS please check out the new page by using the link below. I will be moving my MS blogs from this site over to the new one as time goes by. But I would really like to see if I’m going to get any feedback on this new site before I spend a great deal of time working on it.

The new web address: http://www.msandbeyond.wordpress.com

 

MS and Spontaneous Remission

This is a letter of hope to anyone who has or knows someone with multiple sclerosis. I wasn’t aware that this could happen until I witnessed it happening to someone else with MS. So yes, this is a true story.
About twelve years ago and not long after my own MS diagnosis I was volunteering at a thrift store for animal welfare on Whidbey Island in Washington State. The day I started I also found out that there was another volunteer who also had this yucky disease. And she was much worse off then I was. She described her disease as being responsible for her being blind in one eye and nearly blind in the other. She had to use braces to walk and even then it was extremely difficult. She said that she was always in pain and because of the numbness in both of her feet she hadn’t been able to feel anything in either foot for fourteen years.
We talked quite a bit about our conditions so it didn’t surprise me when she came in one day and said that when she woke up that morning she felt different. When I asked what she meant by different she couldn’t really give me an answer other then she felt different. Little did either of us realize the miracle that was about to take place.
About two weeks after our conversation she was in a complete remission. Her eye sight in both eyes had returned to 20/20. She had full feeling in both of her feet and no longer needed her braces because she could walk just fine without them.
When I asked my Neurologist about this he stated, “Yes spontaneous remission is possible, but it’s very rare, so I wouldn’t get my hopes up to much.”
I was like, are you kidding, sometimes hope is all people with MS have. And let’s put this into perspective. If MS can turn itself off almost as fast as it can come on then that means that there is some kind of a mechanism controlling it. And if we can find that switch then I could care less whether I have the disease or not as long as it stays turned off!
And this gives me tremendous hope regardless of how rare it might be!

https://msandbeyond.wordpress.com/2015/01/26/multiple-sclerosis-by-the-numbers/

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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MULTIPLE SCLEROSIS

My First Attack

     My first attack was about nineteen years ago when I lived in Maryland.  I was working at the Bethesda Marriott and that’s where I started to notice some tightness in both of my legs.  This tightness was irritating but not debilitating so I really didn’t pay it much thought.  As the weeks went by the tightness started moving its way up into my lower back and causing my sciatic nerve to hurt.  Again, I ignored it thinking that what ever it was it would just go away which in fact is exactly what happened about a month and a half later after a few more symptoms.  After sticking around in my back for a few weeks my MS was on the move again this time causing my arms to be a bit weak and my fingers to tingle if and when I raised my hands above my head.  Each time my disease would move upwards, like from my legs into my back, and then my back to my arms, the discomfort in the lower area would fade away.

     The last stop for this first attack was in both of my eyes.  Every time that I would go to lay down at night and right after I would close my eyes it was like having a built in strobe light flashing behind my eyelids.  And this was when I really started to become a little concerned.  I guess it took the thought of not knowing what this was along with my fear that I could lose my eyesight to bring me to the reality that I should go and see a Doctor.  And so I made an appointment.

     By the time that my appointment rolled around most all of my symptoms and discomfort had gone away with perhaps just a minimal amount of residual after effects still present so my concern was fading along with the symptoms.  The Doctor gave me a pretty complete looking over and asked a number of questions but even he didn’t seem all that concerned much to my relief.  In the end he told me that he really wasn’t sure what was wrong but that perhaps I had just pinched a nerve and since it seemed like it was going away he was pretty confident that this experience was over.  And he was right, for the next six or seven years I didn’t have any symptoms that were like what had happened previously accept that on occasion when I moved my head in a certain way I would get this little electrical kind of tingle that would run down my right leg and be gone in a second. 

     Looking back on all of this now I don’t know if I was blessed in not knowing that eventually I would be diagnosed with MS or not.  You see this was back in the late eighties or perhaps around nineteen ninety when this all occurred and there wasn’t really a whole lot they could have done for me even if they had the proper diagnosis.  And sometimes I even wonder if perhaps my Doctor may have had an idea of what it was but decided against telling me, but I guess I’ll never know?

     What I do know is that six or seven years later it all came back with a vengeance, and the real nightmare was about to begin! 

 

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