Wednesday, October 20, 2010

IT’S NOT LAZINESS…JUST NOT MUCH TO TELL

So much for my goal of keeping my blog postings more frequent, maybe that’s a good thing because there hasn’t been much to report throughout September. I’m not too sure how to explain October’s assessment because I’ve got some mixed feelings. For the most part things are status quo but some old MS issues have been creeping up. I did say that my balance and mobility hadn’t improved but over the last few weeks my walking movements and balance seem to have deteriorated slightly. It’s always hard to make an objective observation with these things because the disease is by its very nature full of ups and downs. My feet seem to be dragging more and the speed and level of confidence associated with moving around have been on the decline, or so it seems. In addition to this, my eyes have started to really bother me again. What does any of this mean…who knows!

I still go to the gym and my core and leg muscles have definitely strengthened, my energy levels are still pretty good and I continue to feel quite well. It is still a struggle to get my butt into the gym 3 times a week so I sometimes have to settle for two but I force myself to exercise none the less. I know that it is definitely beneficial and you know what they say…”use it or lose it”! I fundamentally agree with this even though “they” said it. I have an ongoing joke about “they” who think they know everything when typically they don’t know crap and who are they anyway?

I have also started taking Tysabri again after being off of MS drugs for over two years. I’m not all that comfortable with it but after lengthy consideration I made an informed and educated decision to begin the treatment again. Many people believe that after they have had the angioplasty procedure that MS drugs are no longer necessary but I don’t fully agree with that idea. I still believe that Zamboni’s discovery is the most important breakthrough in the treatment of MS that has EVER been made but at the risk of sounding like a neurologist or health bureaucrat, the results are not in. Truthfully I need to see proven clinical results over time but am I sorry about having the treatment, NOT FOR A MINUTE!

The fact is that when I’ve been on MS meds I have not had an attack and every time I’ve stopped the drugs I’ve had an attack. That’s not all good news because I’ve always been on a path of continuous progression but at this point I really want to avoid any type of acute exacerbation. After all Dr. Zamboni never suggested that patients should stop taking their medications, in fact I think he encouraged people to continue with their treatments. My decision to return to Tysabri was not an easy one given the risks because the drug can lead to a potentially deadly brain infection known as PML. The scary part is that PML cases seem to be on the rise with Biogen reporting 55 cases as of June with 11 deaths! This is probably due to the fact that the risks increase the longer someone has been on the drug and that there are many more people taking it as each year passes. The positive results of Tysabri still remain and I do have personal knowledge of many people who have experienced significant improvement in their quality of life. Again as with everything else, the benefits to those of us with secondary progressive or worse are unknown and unproven, hmmm…same old thing!

So I had my first infusion last week and as I sat back in the easy chair looking up at the small clear bag containing the drug slowly draining down the clear intravenous tube directly into my vein and throughout my blood stream I couldn’t help but cringe at the hypocrisy of our medical system. They don’t know, they meaning doctors, researchers or the pharmaceutical company, what this solution now being pumped into my body will do for the progression of my disease or if it might even kill me! Since we first learned of the angioplasty procedure, the outcry from neurologists, MS Societies and health authorities regarding the risks of “the Liberation treatment” have been yelled out across the world. What a joke!!! Out of the now thousands of procedures that have been done, outside of the first two adverse incidents that were reported very early on at Stanford, I have not heard of one significant problem. Granted I haven’t been nearly as involved in the online forums and MS websites as I was earlier but if any serious events or side effects have occurred I’m positive that the anti CCSVI forces would have been all over that news! I still view it as an outrage that MS sufferers are denied this basic treatment.

At least the wheels of change are turning in our view of CCSVI and the efforts to study it are slowly coming to fruition. Some organization is slowly coming about to track people who have had the procedure, where they have gone and the results but there is a long way to go. Saskatchewan announced yesterday that the province will fund $5 Million to research CCSVI. They will use a similar format as the MS Society used to call for research proposals and establish an advisory board to determine the trials that are best suited to prove the validity as a treatment for MS. I’m not really sure what this means but I am very confident that Saskatchewan’s approach will be substantially more meaningful than that of the MS Society. There is much research going on around the world, I just hope it is coordinated to actually be useful and prove or disprove something about the Liberation procedure.

It is coming up to four months since my procedure and my goal was to be tested again within six months of treatment to check if my veins are still free from blockage. Well I’m waiting to be notified of my appointment date for a Doppler ultrasound but I’m told it should be late November. The Sunridge Diagnostic centre will be performing the test and apparently they’ve been working hard to understand the proper protocols and techniques for specifically diagnosing CCSVI. The centre originally had a poor record of false negatives but I believe they have now had proper training and are more reliable. I didn’t even have to fight over getting tested, I just got a requisition from my doctor and Alberta Health will pay for the test. Maybe I shouldn’t be speaking of this so upfront, there may still be spooky dudes out there watching for this kind of thing attempting to stall CCSVI progress. I still can’t believe this kind of devious underhanded crap happened here and in the U.S. At any rate I will be tested and hopefully the clinic knows what it’s doing now. I don’t even know what I’ll do if they find blockages again but I need to take a look. I guess I’ll just deal with things as they come, like always. Regardless of what happens with either the CCSVI or Tysabri, I’m very glad that my hope and faith are in the hands of God and not doctors, scientists or government!

I have always been a self advocate for the decisions I make about treating MS. I’m not the type of person that can sit back and wait for something to happen be that with the course of the disease or treatment alternatives. Since I was first diagnosed I promised myself that I would fight MS with everything I have and I’m proud to have stayed true to that promise. That is why I’ve been on crazy diets, strict vitamin and herbal remedies. That is why I sourced out stem cell transplants and raised the money to go to China for treatment. That is why I was so diligent in my effort to be treated for CCSVI. That is why I’ve decided to subject myself to the potential risk of a drug that may or may not help me and possibly kill me (it is a calculated risk that is about 1 in 1000). That is why I go to the gym and stay as fit as I can. I do all of this to stay as strong as I can and battle against multiple sclerosis because I promised myself that I would, and if not for my sake then for my children. My daily existence is a struggle as simplistic as that may sound. The effort required to do two loads of laundry and make dinner can consume an entire days worth of energy but that’s just how it is, I fight through it and overcome. I pray that God gives me the strength to maintain this fight but I pray even more relentlessly for His healing hand to touch me to end this fight.
LC

3 comments:

lorelei said...

"Who are they anyways?"

They told me...when I was young, that if I put my wet tongue on a frosty metal pole, it will be difficult to remove. THEY were right, I listened, my sister did not!!

They said...if you live a healthy life, with exercise, taking care of your skin, eating right, & remaining positive when you get to your forties, you won't look like you have...they have something there, are they right?

They said...if you get an education you will find getting jobs easier, they were mostly right on this too.

They said...if you find someone that you connect with and love you can overcome anything...

...NOW...

I am finding that I had to find some other "THEYS"...theys that would help me to understand, even if just a bit better, what the man I love is living with everyday. THEY are helping me with that...I follow their blogs, so I can understand better.

They are....whom we seek when we desire knowledge and understanding, some of them are fools, others are sages! YOU are now a part of a THEY, the they that others will go to to find information, courage, strength, & inspiration. So don't knock all THEYs, I love one of them ;)!!

LT

Kara said...

I have had 48 Tysabri infusions. One nice thing about moving to Germany the infusion is 10-15 min long and I leave right away. They stick a needle in, no threading a plastic one so that you can move around, just a metal one and I stay very still. I had CCSVI done Aug 6 and saw some improvement. Right now the coldness has come back on my right side and my walking is not as smooth anymore. I tell ya, once you can lift your toes and look "almost" normal walking...you really notice it when you can't do it now. I will be interested to see what they say for you and me in 6 months. Will have the procedure again if I have to here in Germany. Keep well

Bea said...

My heart is aching for you, Lee-I admire you sooo much for your strength,your positive attitude and your faith!! You are the most strongest person I know!! We just have to keep our faith, trust and hope in God, Right!! I love you so very much-am here for anything I can do for you--you are a great inspiration to others!!!!!!!!!