It began with a wave of hope and a strong wish — could we be the last generation of people with multiple sclerosis? Of course, this sentiment wasn’t what neurologists or politicians or even Dr. Zamboni himself wanted to hear. But we heard it — this voice inside that kept asking “What if this is the end? Could we be the last generation of people with MS?”
Over time and through the observations of members of our CCSVI family who sought early treatment, we shifted to think if this wasn’t an all-out cure for MS, then it certainly is the best therapy for symptom relief the world has ever seen. We know this in our hearts and many of us who’ve been treated feel it every day.
So, what do we say to the next generation — our children? What would you say if one of your children has neurological symptoms, but no diagnosis of MS? Are we going to see the start of The CCSVI Generation?
Well, I am in exactly that position. My son, Jon, was evaluated 10 years ago for something the neurologist eventually called “Benign Fasciculation Syndrome.” We were told by two neurologists who knew my history “This is absolutely not MS.” Many of us have heard that one before, unfortunately.
As a mother, I had to know if I had passed on my twisted, sick veins to my child and if he could be helped by the same treatment that brought me so much relief. I remember my early MS years when doctors told me I was healthy despite numbness, bladder retention, vertigo, and more. Neurologists included, they told me there was nothing wrong. One neurologist told me, literally, to go “Go fishing.” He clearly thought I had a mental problem and just needed to relax.
I went for retreatment and, because I needed someone to accompany me anyway, Jon came with me to have his MRI/MRV. It felt strangely terrifying to hear the words that your child’s veins are stenosed. It’s such a mixed bag of emotions; I don’t know quite how to express it.
Jon had fasciculations (large muscle twitches) any time he sat down for over ten years. He also was also diagnosed with very poor circulation to his gums. He had noticed other symptoms emerging.
I had a hard time getting past feeling guilty for passing my vein abnormalities along to Jon. I convinced myself he now faced an uncertain future with unwelcome similarities to my 31 years with MS. I cried the night before our treatments, a lot. I was nervous, excited, nauseous, happy, strong, weepy, and confident. I guess, I was just being a mom.
I could also see Jon was struggling ~ the uncertainty of the situation was getting to him. Imagine reporting for CCSVI treatment not even knowing what disease you had, never mind what the treatment would look like and if it would even treat your symptoms. Remember at least two neurologists told him years before he didn’t have MS?
Jon went from zero to 200 in terms of personal CCSVI and MS discovery in less than 5 hours. Because Jon followed me into the operating room after my CCSVI procedure, I couldn’t be with him for most of it. More guilt…
Moments after being whisked away to get prepped for my treatment, my phone rang. It was the doctor wanting to deliver the news to Jon about what diagnosis his MRI revealed. I handed the phone to Jon’s fiancé and she took it to Jon in the nearby waiting room. I was left alone with my thoughts about whether my son was now being told he had MS or even something else like Parkinson’s (his grandfather had it) or a brain tumour. It was these thoughts that preoccupied my mind as I was rolled into the treatment room.
Once in recovery after my half hour treatment, I counted the minutes until I finally saw Jon appear. It’s never good for a mom to see her child with wires and IVs hanging everywhere; I was both reassured and worried. I could hear him respond to the nurse in a calm voice, but his body language wasn’t good. We lay side by side in recovery for the next two hours. I learned they stented his azygos too, but it wasn’t until the doctor appeared that we learned the placement and size of stents were identical. The doctor shook his head and remarked how amazed he was with the similarities of our veins.
Remember all the claims we don’t know if CCSVI is a result of MS because it seems length of time with the disease is linked to CCSVI severity? The stenoses are seen as artifacts of the MS disease process by some researchers. They want us to believe treating the remnants of the disease isn’t as appealing because such treatment could never alter the course of the illness.
I was never convinced of this argument and now I know it to be untrue. I’ve had MS for 31 years; Jon is only 28 years old. Significantly, Jon’s MRI showed he does NOT have MS.
Now, over six months later, Jon hasn’t experienced a single fasciculation. If he was going to develop MS some years from now, maybe his early treatment for CCSVI has changed his destiny. As his mom, I am eternally thankful for that.