Tuesday, June 21, 2011
In talking with several friends the past few weeks I have to bring up something, Tysabri vs CCSVI benefits, dangers, risks and what will help us best. My thoughts are as follows.
We all must decide as we sit staring as this disease and suffering from a multitude of issues what benefits we could gain if any from using any drug or other treatment. We are all faced with a terrible progressive disease. Will a drug cure me…….that answer is no. There is no cure for MS. Different drugs offer different options and do different things. Please do YOUR OWN research before blindly relying on your neuro to make the call. Be an informed MS patient and rely on yourself first to make these BIG decisions. Neuro's don't think like you nor should they make decisions for you. Sadly they are not always right and they don't always have your best interest at heart (I won't go into all that now).
Lets take Tysabri as example 1. One of if not the number one prescribed MS drugs. Tysabri basically blocks "errant" white blood cells. This drug is targeted toward patients with highly aggressive forms of the disease. The theory behind Tysabri is that MS an "autoimmune" disease attacks its own white blood cells. This causes diminution of the protective sheath that covers the nerves. This complicates communication between the brain and the rest of the body. This in turn brings on all the symptoms related to MS (muscle spasms, stiffness, fatigue and memory and concentration issues etc. etc.). The simplest, basic explanation I have seen of Tysabri is that is keeps white blood cells out of the brain. The key thing is that reduces your probability of additional exacerbations. Has this drug helped people? The answer to this appears to be yes it has helped some people. Dangers are possible development of a brain infection called progressive multifocal leukoencephalopathy or PML. To date 124 people have died from the complication.
CCSVI as example 2. CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis. As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine. CCSVI treatment is a non-operative, minimally invasive intervention usually performed as part of a catheter-basedendovascular procedure. CCSVI treatment employs either balloon angioplasty and/or stent placement to open or clear obstructions from the veins that drain the brain and spinal cord. Again I encourage you to Please do YOUR OWN research on CCSVI. Personally I have had a GREAT breakthrough with my MS having been treated for CCSVI. This doesn't work for everyone but does help a very high percentage of people. While the research is still being done, the help to MS patients is far better then anything currently being offered. The dangers to the CCSVI treatment and the angioplasty. Basically all the dangers involved with standard angioplasty apply. There is a possibility of restenoses on the veins (closing back up). 2 deaths have been tied to the angioplasty procedures I am aware of for CCSVI. One was a stent migration issue (can happen in angioplasty) and the other was a cerebral hemorrhage (can't be clearly linked to CCSVI).
All the complications, dangers and the 124 deaths vs 2 has to make you stop and think. What are the neuro's afraid of? I obviously have my own thoughts on what a person should or should not do based on my experience and what has happened to me.
The bottom-line to all this is please look at the facts and do your own research. There is no right or wrong answer. MS is personal and different for everyone. The answer is what you feel is best for you after you get educated on the facts. It's not what others think is best for you.
YOU DECIDE how to deal with YOUR MS.
Friday, June 10, 2011
Great letter I came across this am. (Original post)
We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out...... to the Church or Temple every weekend; we are your peers; we are human beings.
We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.
Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.
Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"
Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."
We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....
I didnt write this but the words say everything.
at 8:20 AM