Tag Archives: MS

MS IF YOU WEREN’T ASKED DON’T TELL

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Foothills of Mount Baker

Mount Baker Foothills

     Many Americans are aware of the fact that because of the ADA, Americans with Disability Act, they are not required to answer any questions about whether or not they suffer from any disability. In fact about the only thing a prospective employer can ask goes something like this; Are you capable of performing all of the tasks that are required in the job description with reasonable accommodations? That’s it; you don’t have to answer anything else about being disabled or not unless you choose to.

     The reason I bring this up is because of a comment a gentleman made on one of my articles that I posted. He said that recently his drivers license came up for renewal so off he went to get it renewed. And everything was breezing right along until he mentioned that he also had multiple sclerosis and then everything changed.

     Normally the only thing that you need to do is fill out some paperwork, take the vision test, pay, and you’re done. However, in his case they not only made him do that they also made him take the entire driving part of the test as well. I’m not sure what state he lives in or whether or not this was even legal, but I thought I would write about it and make others aware of this.

     And the moral of this story is, if they don’t ask, don’t tell!  

Imagine: A Drug Free MS

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Copaxone

     My very first multiple sclerosis attack, which by the way my doctor at the time assured me was just a pinched nerve, lasted around three months. And my symptoms were extremely mild although they did pretty much affect every part of my body. And then, at the end of those three months, that was it I didn’t have any other attacks or symptoms for the next six plus years.

     Fast forward twenty two years and I’m reading how in many cases, after that very first MS event, researchers now believe that the body essentially still retains its ability to repair that initial damage that is done to the myelin. And at least in my case this certainly seems to fit my own disease’s early progression. However, as time goes on your body slowly starts to lose its ability to continue these repairs and the damage becomes much more serious to the central nervous system. Which also seems to fit me, unfortunately, pretty well.

     If that is all true, and only more research will answer that, it seems to me that science should eventually be able to turn the bodies own ability to make these repairs back on. And that is all very encouraging but it was something that I read a few minutes later in my own research that really caught my attention.

     Many researchers are stating that it appears that most of the damage caused by multiple sclerosis takes place up until the age of sixty. And after this, MRI’s are showing little further deterioration in the brain and spinal tissue. And their also starting to question whether or not it’s even prudent to continue use of any of the current disease modifying drugs as they may no longer be having any effect on MS progression.

     Well, I’m not sure about anyone else, but I sure am tired of giving myself daily or every other day injections. I plan to watch the studies very closely over the next couple of years, which will make me sixty, to see if this continues to look like a reality. And if it does, I plan to have a very long discussion with my neurologist.

     I’m rapidly coming to the conclusion that it may be time for me, and perhaps others, to start to consider weaning themselves off of these very expensive treatments which in turn would start to squeeze these drug companies’ profits to the point where they may start to actually look for a cure instead, or, probably not!

by Bill Walker

I just recently published my very first novel, if interested here is the link:

http://www.amazon.com/Visus-William-C-Walker-ebook/dp/B00U8ZN4GE/ref=sr_1_1?s=books&ie=UTF8&qid=1426799056&sr=1-1&keywords=Visus

Multiple Sclerosis by the Numbers

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100_0572     Worldwide the number of people that have been diagnosed with Multiple Sclerosis is somewhere between 2.3 million and 2.5 million. In the United States there are roughly 450,000 to 600,000 individuals that have been diagnosed with MS which mathematically works out to 1 in 4 or 25% of all patients world wide. And that number is quite simply staggering when you consider that there are 7.5 billion, give or take a few million, people now living in this world. Which if my math is correct means that about 3 out of every ten thousand people will be diagnosed with MS worldwide. In the US that number works out to roughly about 2 out of every thousand. I admit these are very rough numbers but there close enough to show that the incidence of MS in the United States is much more prevalent then anywhere else on the planet.

     Let’s look at this in a different and even more startling way. If we take the number of US diagnosis’ and divide that into the total number of people afflicted with MS worldwide we find that 1 in 4 or 25% of all people with Multiple Sclerosis live in the United States which definitely begs the question, why? Especially when you consider that we have roughly 5%, or one 20th, of the total world population, again I ask, why?

     When I worked through these numbers I did only the Multiple Sclerosis numbers that are easily found on the internet and I didn’t look into all other autoimmune disorders as a whole but I wonder if I did would they show a similar distribution of autoimmune disease in the US as compared to the combined world population?

     If my math is even close to being correct it strongly suggests that there is some kind of environmental trigger that is far more prevalent here in the United States then anywhere else in the world that’s the only thing that makes any sense. And in my opinion with this information it should not be all that difficult to determine what that environmental trigger really is which would answer a whole lot of questions about this, and perhaps other, disorders of these kinds and what kick starts these disease processes into over drive.

     What do you think? Make some noise whenever and where ever you can. I strongly suspect that we, who have these autoimmune diseases, are the canaries in the mine and are just the first people to succumb to an ever, and increasingly more polluted, and sick planet!

Bill Walker

MS and My Retinal Detachment

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     100_0548 I have Multiple Sclerosis and I have also had some pretty serious issues with my right eye lately which, surprisingly enough, have absolutely nothing to do with each other. First, over this last summer, I had a detached Vitreous which was terrifying in that I had floaters and all kinds of visual distortions that ultimately my body was able to correct on its own. And then a few weeks ago in early November I started to have what I thought was another round of the same detachment so I paid little attention to it until I started to lose about 60 to 70% of my vision in my right eye which sent me back to the eye doctor. And in this case it was a very good thing that I did as a Detached Retina I learned is a whole lot worse, seeing as it will eventually lead to going blind in that eye, if not corrected quickly.

     A scant 24 hours after my diagnosis I found myself going into the first of a two day procedure where they inject a gas bubble straight into your eye to push the retina back into place, which sounds gross, but isn’t nearly as uncomfortable as you might think. On the second day I was taken into the laser room where they shot a laser beam straight into my right eye to reattach, or weld would be more like it, the retina back into its proper location. As the Ophthalmologist worked on my eye he started to tell me just how lucky I was to have this happen now as opposed to ten years ago when this procedure was just in the very early phase of being developed. In other words, I probably would have lost the use of my right eye ten years ago and for many people once this occurs in one eye the likely hood of it happening in the other eye jumps significantly which is why I have to go back in two weeks to have the laser part of this procedure done again on a few weak spots in my left eye.

     And this procedure actually had a profoundly positive effect on my overall out look when it comes to also having MS, I started to consider just how fast science is moving and discovering new ways of treating and curing many health problems. If you’ve been reading all of the studies that are currently being done on MS and a wide variety of other Autoimmune disorders, as well as all diseases really, you start to think that it really is possible that we all may once again be able to hike up a mountain side or ride a one hundred mile marathon bike race without all of the ravages of these awful diseases holding us back.

     Don’t get me wrong, I certainly didn’t enjoy my Detached Retina experience by any means, but it did help me to find my faith in a medical system that I have quite often been critical of in the recent past. We will find a cure to Multiple Sclerosis in the near future, of that I’m absolutely certain. My Holiday wish for all of us is to see, and experience life once again to its fullest, without any adverse effects from this degenerative malady that we call Multiple Sclerosis!

 

Happy Holidays to all with hopes for 2015 being the year that we can truly see the beginning of the end of this disease. And, who knows, perhaps the cure has already been discovered and is just a clinical trial or two away from becoming a reality!

 

Bill Walker

MS and My Experience in a Clinical Trial

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Bill Walker

Bill Walker

Literally just months before I was stricken with my first major MS attack I quit my job to search for another position which meant giving up my health insurance and everything else in hopes of bettering my life. And as you probably have already figured out, this was not one of my best ideas and I paid for that mistake mightily. Let’s fast forward a year and a half roughly from that point to my diagnosis of a major disease with no insurance and no money to speak of to try and treat my illness. It became pretty apparent pretty quickly that without insurance I was going to have to be creative when trying to deal with the crushing news that I had Multiple Sclerosis and no way to financially deal with it. And then someone, I don’t remember who, asked if I had considered signing up for a Clinical Trial?

     When I first started checking out what and where I could go I was apprehensive about whether or not you needed to be insured before they would consider you, and when I found out that you didn’t need any insurance I was ready to do whatever it took to get signed up as it finally felt like something was going right in my life. A few phone calls was all it took to bring me to Virginia Mason Hospital in Seattle Washington and to Doctor Mariko Kita head of staff in the Neurology’s clinical trial’s department. It just so happened that they had two new studies that were just getting underway and in both cases the patient, me, was assured of getting a real drug and not a placebo as can often happen in one of these studies where a control group is always used to determine the efficacy of the drug, or drugs, that are being studied. After considering them both I choose the one that sounded a little bit safer and began the long question and answer process that you have to go though before even being seriously considered. And on the very next visit I was accepted into the study I wanted to participate in and shuttled off to my intake physical which is a real physical where you are probed prodded and lab tested for anything that could negatively influence the outcome of the study before finally being sent to EKG for a heart monitor test. I passed everything with flying stars and told when to return to start my study medication.

     In the study that I choose to participate in there were three groups the first one was the control group that received 20mg Copaxone and since this group was receiving a pre-filled daily dose there was no way they could use this group as a blind study group where the Doctors who were doing the study wouldn’t be able to tell the difference in results with the drug being studied which is often the case. The other two groups consisted of one that would receive the regular dose of 0.25mg Betaseron, now I think they have changed that to 0.30mg, every other day and the third group would get the increased Betasron dose of 0.50mg every other day. The study was a two year blind study between the two Beatseron groups to determine if the larger dose was more effective then the regular dosage. After the two years was finished I received the study results and found out that I had been in the regular 0.25mg dose of Betaseron group. And in the studies final conclusions it was determined that there was no statistical difference between the regular dose of Betaseron and the larger dose of Betaseron.

     My own personal conclusions were a bit different though once you consider that I had received thousands of dollars worth of medication and, for the most part, free health care for two years, my conclusion was a resoundingly positive winning scenario where I was happy to have played my part for science.

     However there are many things to consider before deciding to become a part of a Clinical trial. First of all many of these studies are done at University Hospitals which are almost always located in the heart of the biggest cities in the country which means, or at least in my case it did, an hour and a half drive several times a week in the beginning of the study and at least once every couple of months towards the end. And these studies are run on a very tight schedule so getting caught in traffic adds quite a bit of stress when you’re trying to make an appointment while also trying not to go postal on many of the idiots who seem to think that if they can just get ahead of you, it will be clear sailing to where ever they need to be.

     And when you finally get to the hospital there is another set of problems as many of these hospitals are mini-cities just in themselves, with the Neurology Department on the twentieth floor of one building, your blood draw at the Lab in a completely different building, and the MRI machine located in the basement of a third building a block away, and on some visits you may have to go to all three buildings before you’re done. And for the most part it’s really up to you to get to these separate locations on your own or with family help if at all possible.

     And the paperwork, oh yes, the paperwork, at the beginning of every study be prepared to receive a large notebook sized study manual that will outline the entire study from medication to exams and whatever you and everyone else including Doctors, Nurses, and Clinicians, are expected to perform. And because, this is really a contract, you are expected to read each and every page before you sign each and every page. And when that’s all done they close the deal with the scariest page of all which is the one that states that you understand that though every precaution has been taken to insure your safety there is always the possibility that something might go wrong and that by signing this document you are pretty much giving up all of your legal rights throughout the study and beyond. In essence, this page states that you’re consenting to be a lab rat with very few legal rights, but you’re also accepting the possibility that this study medication may also turn out to be the ultimate cure.

     With all of that in mind, would I ever consider being in another Clinical Trial in the future? The answer for me would be a resounding, “Yes”! I can’t think of a better way to help my fellow MS’ers then to put myself into this position to help find a cure to this monster of a disease. And if I could find one where the research included the study of stem cell injection with the possibility of repairing the damage to the myelin sheathing around my nerves I would be all in as this, in my opinion, seems to be the best path to finding a meaningful treatment or even an eventual cure for this debilitating disease. And if that ever happens, you all will be the first to know!

 

Bill Walker

The More Humorous Side of Multiple Sclerosis

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100_0544

Election 2014, Run Forest Run!

     Though I am not happy about having MS I do have to admit from time to time I have to laugh about something’s that are a direct result of my disease.

                                    *****

     You know, it might be MS if, the next time your at the Doctor’s office scanning through all of the entertainment and fashion magazines and find yourself asking, “Who are these people?” And it might be MS if you find that you can read a newspaper or your favorite magazine twice as fast as anyone else in your family because your fingers just can’t seem to separate the individual pages.

     And it also might be MS if, you can shoot a pen eight feet out and away from between your fingers, like a dart, every time you go and try to pick one up sending family and friends diving for cover. And it may also be MS if, the next time you look at your check registry and find that you dated all of your check payments for the year 2017. And finally, you know that it might be MS if, you discover that you have changed the spelling of many common words in the English language the next time you sit down to write a letter! Thank God for spell check, even if I do hate those squiggly red lines!

 

     Trying to keep a lighter attitude towards Multiple Sclerosis I think is a healthy approach. If anyone wants to have my blog linked to their email so they can ignore the thousand places that I post these on facebook, all you have to do is just look to the right of this page where it tells you how to sign up to receive this blog as a link that you can open directly from your email, or you can just click on one of the thousand links in facebook, your choice!

 

     Next blog, I hope, will be about my experience of being in a, Clinical Trial, if you’re interested!

 

Bill Walker

MS-A Cold-Zinc-A Difficult Choice

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100_0481

How do spiders do that? Those two trees are at least ten feet apart.

     Recently I woke up with all the tell tale signs of an emerging cold, you know, the scratchy throat, the slightly more then usual MS weakness and tightness in my muscles a little sniff here a little sniff their with a sneeze or two thrown in for good measure. And it’s in these very early moments of an oncoming cold virus where I have to make a very difficult health choice. If I hit a cold hard as soon as I notice it coming on with mega doses of zinc I can almost always knock down both the severity of the cold as well as the duration of having to put up with this pesky little health annoyance by about half as much. And it would seem that the answer would be simple enough to deduce, but it’s not.

     For all of the benefits that I get from using zinc to combat a cold I also have to accept a sudden flair in all of my MS symptoms after about the third day of using the zinc. And if I don’t stop completely after the fourth day I risk having a full blown MS attack that could last for days or even weeks. And this is knowledge that I have acquired over almost sixteen years of having both colds and Multiple Sclerosis so I know for a fact that this is how my body reacts to zinc.

     And in fact, while were on the subject, this is pretty much the same choice I have to make when deciding whether or not to get a flu shot or not each year. I really don’t know what they put in the flu vaccine, though I’ve heard they use mercury as a preservative, but whatever is in it I seem to always have a reaction that in many cases is even worse then having the flu itself.

     And when you consider that recent studies have shown high levels of iron deposits in MS patient’s brain lesions after they have passed away I just have to wonder if heavy metals are something that people who suffer from MS, or perhaps any autoimmune disorder, just can’t tolerate to much of in their systems.

     However, these are not the only triggers when it comes to me personally and many of these other vitamins have nothing to do with metal in any way, or at least as far as I know. I cannot tolerate vitamin B12, same thing as above my symptoms go nuts after just a few days of trying to take it, however what’s strange is that, no other B vitamin seems to affect me like this. Vitamin E also seems to adversely affect my MS along with Cod Liver Oil, though Omega 3 fish oils don’t bother me at all.

     And one final note here about iodine, I recently read that salt, or sodium, may play a part in triggering Multiple Sclerosis. And I can truly believe this as well, if the salt has iodine added to it which most of the time it does, as at some point years ago I tried taking iodine supplements, for some reason that I can’t remember anymore, and with in two days I stopped as my MS began to rebel violently to the addition of this nutrient in its more concentrated form.

     Well that’s some of the things that affect me. I would be very interested in knowing what triggers other people with MS, or any autoimmune disease, have noticed in their lives? Who knows, maybe we can figure this thing out on our own!

 

By Bill Walker

MS Changes in Weather and Heat Exposer

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100_0262

Yes! It really does snow in Western Washington.

     It’s been quite a few years since I was diagnosed with Multiple Sclerosis and over that period of time I cannot  even speculate how many times I have read that exposer to higher temperatures is linked to a worsening of MS symptoms. And of course I don’t really doubt this, everyone’s experiences are different, but I most be the oddball out because it does not seem to be the temperature that  bothers me but rather, the temperature combined with the humidity that does me in.

     I can go out on any hot day where the humidity is low and not seem bothered at all by the actual temperature. And what is even stranger is that I can take a hot shower, where it is humid, and not feel any worse when I’m finished though to be honest, I don’t take long showers, so that might be the difference here?

     On a slightly different note, I have also noticed that I sleep much better during the Winter months when the weather patterns are primarily influenced by low pressure systems instead of high pressure systems during the Summer months. And this also translates into less fatigue as well as a slight decrease in all of my MS symptoms during the Winter but I still don’t think this is correlated to temperature, or at least, not entirely.

     Does anyone else see a difference in their MS symptoms during different weather patterns? I’m really curious! 

by Bill Walker

 

MS Michael Jackson & Propofol as a Treatment

8 Replies
100_0470

Wall Mural in Blaine Washington

  

      If Propofol sounds vaguely familiar to you it’s because it is the same drug that Michael Jackson overdosed on while using it as a sleeping aid. But it’s also the best damn MS treatment I’ve ever received since my diagnosis sixteen years ago bar none. If you’re not familiar with Propofol it’s a fairly new anesthesia medication that is administered via intravenous infusion just before surgery. And if used correctly it is a much safer drug that also has far fewer side effects, then many other drugs such as Ether or Sodium Pentathol that were used previously for the same purpose. In my case it was used for both a Colonoscopy many years ago and more recently for a Hernia operation.

     In both cases where Propofol was used I can not stress enough at how much difference it made in almost all of my MS symptoms. The first thing I noticed upon waking up even though I had discomfort caused by each procedure was a total lack of pain in my lower back as well as no pain in either of my Sciatic Nerves running down my right and left leg’s. The second was a noticeable decrease in the amount of numbness in both my hands and feet. And the third was very little spasticity in my legs after each of these procedures. And this reduction of pain, numbness, and spasticity lasted more than twenty four hours after my discharge from the hospital.

     Of course I have no idea how Propofol works or in fact what it really does to block your awareness while undergoing surgery but I would love having something like it as a sleep aid at night in a pill form specifically to treat Multiple Sclerosis and all of its other symptoms. I don’t know if Propofol is an anti inflammatory or not but it sure seemed much better at blocking my pain and numbness then anything else I’ve ever tried.

    The benefits as far as I’m concerned were so impressive that I would certainly encourage researchers doing MS studies to spend some time looking into Propofol and any other drugs that work in the same manner as possible future treatments. Yes, it was that good at reducing my discomfort, period. It was as close to feeling like I didn’t have MS as I have felt since before my first major attack!

    

By Bill Walker

MS and VITAMIN D3

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Vitamin Pics 002

Vitamins by Nature Made

     Apparently in the scientific field there is some question as to whether Vitamin D3 is really a vitamin or a hormone.  This vitamin seems to have some unique properties that fit into either or both groups but for my purposes here I’ll just refer to it as a vitamin.

     If you’ve been watching research about multiple sclerosis lately you may have noticed that a lack of Vitamin D3, is suspected of playing a major role in the development of this disease.  The theory is that many of us with MS may not, especially as children, had the ability to produce enough of this essential vitamin in our skin to keep this disease from developing as we got older in life. They came up with this theory based on the fact that people who live closer to the equator, with its more intense sun light, have a much rarer occurrence of MS then do people who live farther away from it. In fact those people who live very close to our planets equator have almost a zero rate of MS compared to the rest of us.

     With all of that in mind I decided that it would be in my best interest to start taking Vitamin D3.  In fact many neurologists are starting to tell their MS patients that it is probably a good idea to supplement their daily vitamins with an additional 5000 units of D3. In my case, and with my doctors blessing, I started taking 10,000 units a day. My doctor ran blood levels every six months for almost two years while I was on this high dose regimen and each time the results came back with in the normal range. After two years she no longer ordered them figuring that it was not going to be a factor.

     And yes, after many years of being on high dose Vitamin D3 I do think I have had a positive response to this as a therapy against my disease progression. I still have an attack every couple of years that lasts a few months but they don’t seem to be nearly as intense as they were before I started my high dose intake. And what’s even more encouraging to me is that I used to have several smaller attacks that would last for a few days and then subside and now since taking this vitamin it has been several years since I have had any of these less intense events. And to be fair I also started Copaxone injections three years ago as well and that also could have made a significant difference in my disease progression but I am satisfied enough with this vitamin to continue its use.

     As always, if you decide to look into adding Vitamin D3 in your morning vitamins and supplements, always ask your doctor first and it would probably be a good idea to have your blood levels checked from time to time as I did just to make sure you’re not over doing it. And who knows, maybe soon they will find that Vitamin D3 mixed with something else will be the magic cure that we all pray and dream for!

 

Bill Walker