Wednesday, October 6, 2010

The Good, the Bad & the Ugly!

October 5, 2010
Due to my disillusionment with specialists in general and neurologists in particular, I have two physicians left. That could change if I gain any more notoriety. Thankfully only one has any interest in the internet. After all what doctor has the time to horse around on Facebook? Today my “everything left over “ doctor had another go at me. If you follow my blog, you know that both my doctors have been supportive of me in respect to CCSVI and my two liberation procedures, in retrospect. I deliberately didn’t disclose my intentions before I had my first procedure. Even in the earlier atmosphere of discovery, I was well versed in the potential consequences for people who have to add the stress of an unwilling doctor added to the litany of tasks we have to complete beforehand. Anyone having trouble gathering the courage to face your neurologist or PCP, I feel your pain. Dr. B. is one of my favorites. He has always treated me with dignity and has never shown any frustration with my perpetual note taking and inquiries on any number of medical questions I employ. I embarked on a new project to drop as many of the medications I could after my MS symptoms became a thing of the past. Today I was victorious. I convinced him that I no longer needed any meds for depression, anxiety or mood swings. The consequences of MS are so far reaching. How could one not be depressed or have a smile pasted on their face when everyday is a battle to get back and forth to the kitchen and bathroom? I knew if I was ever going to have a smile more than once a day, I would have to have it done by a tattoo artist. For some reason I can’t fathom, I was diagnosed with major depression about the same time as I manifested symptoms of Multiple Sclerosis. I have been treated for it all these years with some form of anti-depressant or the other. Once one begins a drug regimen for any psyche meds, they are on a path from which some do not return. Anti depressants are like manna from heaven for those who need them, a curse for those who have pharmaceutically inclined doctors. Drug companies favor their wares which need replenished regularly and for the long term.
Statistically, we don’t stand a chance against emotional upheaval. Now less than six months after the {M}aster of {S}enselessness no longer has a death grip on me, I have no need for anti-depressants or pep talks about how things have to get better someday. That day is here! I was never a total butt, however I had my moments. My appointment today was enlightening for me. I have seen Dr. B. three times since my first procedure. The first time he couldn’t contain his amazement at my mobility and cognition. Or it could be that I could no longer poke holes in his dry wall with my power chair or scooter. In any case, I look carefully at his expressions as he makes notations about my improvements and physical well being. I think once the shock and awe wore off, he was waiting for signs of restenosis or evidence of the dreaded ”placebo effect”. His questions were more direct. He had asked for information about the CCSVI theory before, but today he was much more specific. I now have to prepare a more detailed review of all things CCSVI. He told me that he could not explain my current health status. He also does not understand the venous connection to MS at all. I dislike being patronized by doctors and hospital staff who look down their noses at me when I mention CCSVI.I can barely stifle a snicker when their sneers turn into a “deer in the headlights” look when I tell one of them I had the procedure done and ask what It they think about it. It tickles me.

While I am in a good frame of mind, I have even better news. My labs came back perfectly normal! This would be average news for the average patient, but it hasn’t happened to me for more years than I can remember. I have had pernicious anemia all of my adult life. I am now on the low side of normal, but this is a person who has to have a Dextran infusion or blood transfusion once a year to year and a half. My vitamin D is normal for the first time ever. Now I realize that the procedure cannot be credited with a normal lab work-up. It IS responsible for my clarity of thought and ability to walk all day. I am also highly motivated. The remainder of my life no longer feels like a crap shoot. Finally I am feeling comfortable in my normal body controlled by a normal mind. I no longer have 15 different prescription drugs coursing through weakened and blocked veins. I took a survey of my medical assistance equipment a few days ago. As I looked from the transfer table that my husband used to help me get seated on my shower chair, I was surprised when I felt tears running down my face. My cane, walkers and Roho cushions were neatly stored in a cabinet. My doctor, physical therapist and I jumped through hoops to get a computerized power chair. It was upgraded a couple of times as my disability progressed. I needed hydraulic legs because I could not lift them much off the floor. My life seemed to revolve around this one piece of modern technology. Now it is for sale. When it’s gone, I won’t mourn it’s passing. Once essential for the small amount of independence I gained, they are unwanted reminders of another life, not mine.
This week has been a blend of triumph and bitter disappointment. I lost a friend to MS only months away from liberation. Another friend, Dawn had a very successful procedure and is anxious and ready to kick start a life filled with dreams she thought might never be realized. My own clean bill of health is reason enough to celebrate. Between these extremes is yet another friend , Nancy, whose tests for CCSVI were scheduled for the 11th of this month. Rick and I discussed the feasibility of making the trip so that I could be with her. Both her and I were ready to pack our overnight cases. Today she was notified that her insurance company decided not to cover the tests even though it had been pre-approved for some time. Had she not been informed by her provider that the approval had been denied by the insurance company, the trip would have been a total loss. These situations are intolerable and far too frequent. The nature of these disappointments can no longer be considered coincidental. Happenstance is no longer a viable argument. It is time to regroup and consider options we have perhaps not considered in the past. Now is the time we should have expected advancement in our cause. Instead, we hear reports of higher procedure costs, less than optimal testing , treatments and glitches in the already hideously organized chaos demonstrated by insurance companies. If there is any mass hysteria surrounding CCSVI, its roots can be traced directly to the hypocrisy of the Fumbling Four. (Neurologists, Pharma,MS Societies & Insurance companies.) We need a new strategy or plan of action. Nice guys are finishing last; unacceptable!


Anonymous said...

I didn't know how to find your blog, and I have missed you. I'm so glad you're doing well.


Unknown said...

I wondered what happened to you.I am doing extremely well. For the last couple of years I have had to put off surgery I needed because my general health was so compromised.The last time they didn't think I would come out from under the anesthetic.I had an appointment just a few days ago and my doctor gave me the green light to have them done. My labs are boringly normal for the first time I can remember.
How about you? Have you had another procedure yet? My email is It's really great to hear from you.