If Propofol sounds vaguely familiar to you it’s because it is the same drug that Michael Jackson overdosed on while using it as a sleeping aid. But it’s also the best damn MS treatment I’ve ever received since my diagnosis sixteen years ago bar none. If you’re not familiar with Propofol it’s a fairly new anesthesia medication that is administered via intravenous infusion just before surgery. And if used correctly it is a much safer drug that also has far fewer side effects, then many other drugs such as Ether or Sodium Pentathol that were used previously for the same purpose. In my case it was used for both a Colonoscopy many years ago and more recently for a Hernia operation.
In both cases where Propofol was used I can not stress enough at how much difference it made in almost all of my MS symptoms. The first thing I noticed upon waking up even though I had discomfort caused by each procedure was a total lack of pain in my lower back as well as no pain in either of my Sciatic Nerves running down my right and left leg’s. The second was a noticeable decrease in the amount of numbness in both my hands and feet. And the third was very little spasticity in my legs after each of these procedures. And this reduction of pain, numbness, and spasticity lasted more than twenty four hours after my discharge from the hospital.
Of course I have no idea how Propofol works or in fact what it really does to block your awareness while undergoing surgery but I would love having something like it as a sleep aid at night in a pill form specifically to treat Multiple Sclerosis and all of its other symptoms. I don’t know if Propofol is an anti inflammatory or not but it sure seemed much better at blocking my pain and numbness then anything else I’ve ever tried.
The benefits as far as I’m concerned were so impressive that I would certainly encourage researchers doing MS studies to spend some time looking into Propofol and any other drugs that work in the same manner as possible future treatments. Yes, it was that good at reducing my discomfort, period. It was as close to feeling like I didn’t have MS as I have felt since before my first major attack!
Recently I wrote about a case of spontaneous remission that occurred with a friend from the past and I would love to be able to track her down and see how she’s doing now. But I doubt that’s ever going to happen as our life paths were quite different and she could be anywhere in the world.
However writing that piece reminded me of something else that one of my Neurologist’s said a few years back during one of my appointments. She didn’t question at all that I had been diagnosed with MS as I had a few lesions in several of the Magnetic Resonance Image scans that I brought along with me to our first meeting. I was excited to have her as my Neurologist as multiple sclerosis was her specialty and she only took certain patients so I felt lucky to get her.
It was something she said after looking at my brain scans that surprised me as we started talking at our appointment. The very first thing she said was that she was quite surprised that I had any symptoms of MS at all. Of course I was extremely curious to know why she felt this way so she explained that my MS lesions were all, as far as she could tell, deep brain lesions and that most people with these kinds of lesions did not have the typical MS symptoms. And in fact many of them didn’t have any symptoms at all. And in my case she guessed that I must also have some unseen damage in my spinal column as well that spinal scans didn’t show. She continued by adding that she wouldn’t be surprised if at some future point my MS might go into a long period of remission as this was something that she had encountered in other patients. Unfortunately that hasn’t happened yet but I’m still very hopeful that day will eventually come to pass.
With all of that said, I think that it is very important for anyone who has Multiple Sclerosis to have a talk with their Neurologist about just where on their MRI’s their lesions are showing up and what that means for their own long term prognosis. It may not change anything but I do think that it’s important to know and may add some information about your future MS progression. Remember the information about Multiple Sclerosis is changing everyday so cross examining your Neurologist may be something to consider especially if you haven’t done so for awhile!
This is a letter of hope to anyone who has or knows someone with multiple sclerosis. I wasn’t aware that this could happen until I witnessed it happening to someone else with MS. So yes, this is a true story.
About twelve years ago and not long after my own MS diagnosis I was volunteering at a thrift store for animal welfare on Whidbey Island in Washington State. The day I started I also found out that there was another volunteer who also had this yucky disease. And she was much worse off then I was. She described her disease as being responsible for her being blind in one eye and nearly blind in the other. She had to use braces to walk and even then it was extremely difficult. She said that she was always in pain and because of the numbness in both of her feet she hadn’t been able to feel anything in either foot for fourteen years.
We talked quite a bit about our conditions so it didn’t surprise me when she came in one day and said that when she woke up that morning she felt different. When I asked what she meant by different she couldn’t really give me an answer other then she felt different. Little did either of us realize the miracle that was about to take place.
About two weeks after our conversation she was in a complete remission. Her eye sight in both eyes had returned to 20/20. She had full feeling in both of her feet and no longer needed her braces because she could walk just fine without them.
When I asked my Neurologist about this he stated, “Yes spontaneous remission is possible, but it’s very rare, so I wouldn’t get my hopes up to much.”
I was like, are you kidding, sometimes hope is all people with MS have. And let’s put this into perspective. If MS can turn itself off almost as fast as it can come on then that means that there is some kind of a mechanism controlling it. And if we can find that switch then I could care less whether I have the disease or not as long as it stays turned off!
And this gives me tremendous hope regardless of how rare it might be!