Saturday, May 7, 2011


Well it’s been quite some time since my last update so of course there is a lot that has happened in that time. I left off describing the conditions leading up to a new attack and yes the symptoms progressed into what I can now confirm to be a new exacerbation. I stated that I wanted to jump on things early and within two days of my last posting I was on the prednisone treatment. The same old scenario of the dreaded high dose steroids but I believe it was the right decision because it seems to have tempered the negative symptoms that were developing. It’s sometimes hard to determine the effectiveness of the treatment because the difficulties that I experience are always with me but the key is that things did not progress to the point of becoming extremely problematic. My balance was definitely impacted but not something an outsider would notice compared to my regular mobility problems. I also experienced a significant increase in the neurological pain to my upper chest and armpit area as well as a noticeable decrease in energy and strength. I do believe the steroids were successful because no new problems developed and the difficulty that I did experience was manageable and did not escalate into a serious impediment to my everyday life. It has been a somewhat long recovery though, for two months now I haven’t felt the energy or strength to exercise or workout. Again not really apparent to others but I could certainly notice a difference, my hands and wrists would go through extreme fatigue just using my pepper grinder! Any way things are starting to improve, I did start back at the gym this week but it wasn’t easy. Two months off might as well have been two years, I don’t feel nearly as strong but I know that I’m probably still in a recovery stage and it just takes time.
I do notice more difficulty in walking; I’ve gone from slow to slower if that was even possible! Just picking my feet up is a major challenge and my lack of energy/fatigue is still somewhat of an issue. The pain in my armpit has been extreme at times and very frequent. I can initiate the pain by the movements of washing my hands and the water from the shower head hitting the right side of my body and shoulder will also bring it on! There are many other instances that bring the pain on but these two examples of washing have been consistent triggers. Maybe I should learn to live dirty…not! The good news is that as recently as yesterday and today these two triggers have stopped causing this painful reaction. I hate making a claim like that because sometimes it will jinx me and I’ll end up back at square one but I’m going to take the positive hopeful position.
I saw my neurologist on March 30th and we had a good chat, he spent over an hour with me. I always try to make my appointments for the end of the day so he doesn’t have to rush me out of his office to see another patient. The results of my MRI were good, no new lesions even though I just had an attack! Because I had an attack does not mean that the Tysabri is not working, relapses are still possible even when on medications, it’s just disappointing that I had one! As long as I have no new lesions I’m happy. Whether this is a result of drug treatment or the “liberation” procedure, I don’t really care as long as the disease is not progressing with new activity and brain lesions. I already have my next MRI scheduled for September so we’ll see what happens. In terms of the “Liberation” procedure, Dr. Yeung is not ready to form a definite opinion yet; there is still too much data to be studied. He has a handful of other patients that have had the procedure and all of them had similar results as me. Initial improvements in several areas but after 3 to 5 months they seem to fade away. So the jury is still out on the treatments effectiveness and causal relationship to MS. As more study results are released it seems there is contradictory evidence emerging all the time, not surprising! Bottom line is that a lot more information has to be developed and analyzed before a final determination can be made. In the meantime advancements in diagnostic techniques and angioplasty procedures are growing. I attended a CCSVI seminar where Dr. Hewitt from Synergy Health spoke. Synergy was developed as a separate entity from Pacific Interventionalists in Southern California specifically for testing and treatment of CCSVI. Dr. Hewitt and the other physicians have over 60 years of experience treating vein diseases and have performed more CCSVI procedures than most doctors across the globe to become a world leader in diagnosis and treatment of CCSVI. Dr. Hewitt’s presentation was very informative and I would definitely use this facility for any future testing or treatment.
However, until that time comes, I along with others have to deal with the conundrum of whether to use MS drugs or not. I have made the decision to stay on Tysabri even though there is no clinical proof that it is beneficial for secondary progressive. There are many new drugs coming to market such as Gilenya which is an oral medication recently approved in Canada. Biogen and Teva are both working on new drugs and there are at least three other oral medications coming. The world of MS is rapidly changing, so much that Dr. Yeung says it is difficult to keep up. He commented that sometimes he’d rather sit at home flipping around with the remote control than try to keep up with all of the new developments. There is still a huge mistrust with pharmaceutical companies especially with the recent news of kickbacks to neurologists from Merck Serono for prescribing certain drugs. Serono just agreed to pay over 44 million to settle claims regarding allegations in connection with the marketing of the drug Rebif. This is just the tip of the iceberg; a lot more news has come out and will come out against pharmaceuticals for similar fraudulent and unethical practices. My favorite neurologist Dr. Freedman (huge sarcasm!!!) has disclosed personal compensation and grants from almost every pharmaceutical company and he was one of the staunchest opponents to CCSVI and stem cell therapy, he’s a complete sham and I feel so vindicated in my writings against him! So the debate over the use of MS drugs and other alternative treatments is far from over making it difficult on patients to make informed decisions and to know who to trust. What a sad state of affairs!
On to other issues, I think the change in weather has had a positive effect on me starting to feel better. What a terrible winter and spring we’ve had to endure here in Calgary but I think the actual spring season is finally upon us! No one can actually say this until the May long weekend has passed but I have seen some convincing evidence. As I have probably stated in past blogs, I live on a huge section of land outside the city in a farm setting. There are 14 peacocks that live here as well and they have been hidden until last weekend when they finally made their way out of the barn. I think they have the instinctual sense to know when winter is over, they have all of their colorful tail feathers back and the constant squawking has begun but it’s a welcome sound at this point!
On an even more positive note, I have just recently made the announcement that I am now engaged!!! Going back to some of my earlier blogs, who’d of thunk it! Our wedding won’t take place until June of next year but it’s amazing how fast a year goes by! Ever since I took Lorelei to Egypt with me, we’ve developed a special bond and our love for each other has flourished! Lorelei must be special because I actually let her name my scooter Lola, certainly not a name I would have chosen. Speaking of Lola, she’s seen better days; I don’t think she’s long for this world. That is really too bad because I just can’t live without a scooter and purchasing a new one was absolutely not in my financial plans, especially with my impending wedding on the horizon! She’s been good to me over the years, I’ve had some amazing journeys with her across Canada, the United States, Mexico and even overseas to Europe and the Middle East! It will definitely be a sad day when she goes to scooter heaven.
All in all this is a very exciting and happy time in my life. I have been patient for years waiting for God to answer my prayer for a new love to enter my life and He has now lovingly answered my prayer. I have been far more patient with my never ending and persistent prayer for healing. God has not found it in my destiny to answer this prayer yet but I will continue to pray each and every day! He is faithful and the source of all my hope and strength. He continues to bless me abundantly and for this I give Him my never ending thanks and praise!

1 comment:

Kara said...

I am hoping Tysabri does help you out..I have had 55 infusions and no relapses. I know our MS is different but just wanted you to know. There is also a great group on FB with Tysabri and Gilenya if you ever want to talk to others on the drug.
Congratulations again on the up coming wedding. She must be an amazing woman.