Saturday, October 4, 2014

My Spinal Surgery: Will It Help MS Symptoms?

For those of you who weren't aware, I've been in hospitals (Fredericton, Saint John) for the last 1 1/2 weeks. It started as painful lower back spasms (L3,  L4 & L5) on Tuesday the 24th which could only be semi- treated with morphine, and super elevated MS symptopns: couldn't walk at all, completely exhausted and dizzy, etc. An elevated temp suggested they should check blood cultures and start a regime of antibiotics. When they got the cultures back, they were able to detect that I had a bacterial infection. The pains I had been getting were being treated with a coctail of penicillins (which had since migrated to the tail-bone, and were no longer spasms) suggested I might have spinal infections. As my temp ( and infection) went down, my MS symptoms improved. (NOTE: These MS symptoms waxed and waned for a few days at the same time my temp went up and down a few times).

Then I was transferred to Saint John hospital, so the neurosurgeons there would advise whether surgery was a valid treatment for my problems. Eventually they did.  For me there was the added potential benefit of removing or reducing a stenosis in my L3/L4/L5 area, a stenosis that may have been contributor to poor walking, pains in my lower back, and general weakness.

I had the surgery this afternoon.  There was at least one big spinal - area abscess filled with pus they cleaned out. I didn't talk to the neurourgeons yet, but will find out the details tomorrow regarding things like the stenosis. My hope is that this spinal surgery takes me back, symptoms-wise to where I was when I came back from CCSVI treatment in Poland in 2010. You'all cross ya fingas now, ya hear? :-)

Sunday, August 17, 2014

Wild Turkey and Ganja

It's over four years  since the CCSVI treatment I had in Poland gave me back my balance, most of my energy, and greatly improved my bladder issues. These are no small things, but the treatment did nothing (as far as it’s possible to tell) for the continued weakening of my left arm and leg (including foot drop). As these symptoms continue to get worse, my walking has become more unnatural, thereby leading to hip and knee pain. That, along with pain symptoms from my osteoarthritis and degenerative disease in my spine, means I’m in pain (or at least great discomfort) almost all the time, and I’ve had great difficulty sleeping.

Besides arthritis medicine (which I know helps because of how my arthritis flared up when I had to go off it for several months), I have no other traditional medicine for the pain, in part because of all the potential side effects of the pain medication. I do yin yoga (helps quite a bit) and have acupuncture/massage once in a while, but I find that the most effective immediate (very short term) relief for some of the pains is a good shot of whiskey (Wild Turkey bourbon is best) and 9/9 (9% THC and 9.5% CBD) marijuana just before going to sleep (takes the edge off the pain and makes me drowsier so I can fall asleep). I also have a prescription for 22/1 marijuana for pain during the day, but am not taking it since I can still drive.

So, my question is: what are other MSers experiences with taking high THC marijuana throughout the day for pain, spasms or fatigue reasons? I guess I would like to know what, besides my losing the ability to drive, might be the trigger points I should consider that tip me over the edge to starting to take high THC grass. By the way, there are days I don’t have to drive at all, so I could experiment with it on those days.

Time to Stop Baclofen?

I visited my Neuro on Tuesday, were she suggested, among other things, that I up my dosage of Baclofen since I seem to have been tolerating it so well. However, since adding one more pill per day, I have felt weak and dizzy. It suddenly struck me that baclofen could be the cause of my increasing weakness and reduced balance. I'll be back to my normal dose today, then ask the neuro how quickly to reduce the dosage to zero so as to try life without it for several months.  It'll almost certainly be a trade-off (more leg spasms, less weakness and dizziness), but going off it for a while should give me a better idea of what those trade-offs are.

Monday, July 7, 2014


Just got this note from a SPMS friend:
Hi Ted glad to see you are doing good. Wonder if you heard of the medication Simvastatin which is use for lowering bad cholesterol in your blood ,this medication is used on patients with Secondary Progressive MS, high dosage 80mg, it seems to have good results for slowing down the progression , this of course is still clinical trial,but it's something. I am starting on it. Your opinion would be appreciated since we have the same type of MS .My neurologist agreed with me so I am excited about it. Best Regards.
Has anyone else out there had experience with Simvastatin for SPMS?

Tuesday, June 10, 2014

Still on the Weed

I've been on marijuana from CanniMed for a couple of months now. Though I was prescribed two kinds of marijuana (one with high THC for energy for the day time, one with high CBD and lower THC for pain and sleeping), I find that I am only using the high CBD weed to help me sleep (in part by reducing pain). I just can't imagine using the high THC strain during the day while I can still get around on my own.

The two strains I'm getting from CanniMed are the 22-1 (22% THC, 1% CBD) and the 9-9 (9% THC, 9% CBD). Though I've just ordered a second batch of 9-9, I'm still not sure if CanniMed is a good provider. The first batch was not completely dried and so didn't grind well - plus made me worried that it would be mouldy. I'm not crazy about the smell of their stuff, either: both strains have a kind of "medicine" aroma I don't care for. However, the way things are set up by the government, I don't think I can easily switch suppliers . To do so, I'd probably have to get the doctor to fill out all the documents for a new supplier (at the cost of another $60).

By the way, my Arizer Solo vaporizer has been working great (so far). Vaping is definitely the way to go. A lot less harsh on the throat, and when I'm vaping, people in the same room can hardly smell it.

MS and Trauma

Though this paper suggests that there is not evidence from good quality research to tie physical trauma to the onset of MS, I had a very bad body-surfing accident less than 4 months before my first MS symptoms and have always wondered if there was a causal relationship.

Friday, May 9, 2014

A Glimpse Into The Abyss

For most of this week I have been sick with a cold. In terms of the cold itself, it was far from the most severe I've ever had. However, for the first time (that I can recall), a cold has drastically increased my MS symptoms for a period of time. This included a significant worsening of my "normal" left-side weakness and a return of the balance problems that went away when I had CCSVI treatment in 2010.

My cold is mostly gone, and my symptoms are back to "normal", but it gives me sobering insight into how even a modest worsening of symptoms could greatly decrease quality of life.

Tuesday, April 29, 2014

Four Years after CCSVI Treatment

It was four years ago today that I was treated for CCSVI in Katowice, Poland. My left-side weakness continues to get worse (except for those muscles I'm nursing back to some strength through physiotherapy). However, my autonomic functions, my balance and my fatigue continue to stay improved to this day - YAHOO!

Now if I can continue to get my insomnia and hip pain under control, I expect to really start living it up (well, sort of). I'm hoping that the marijuana I ordered today (with high CBD content) will help.

Thursday, April 10, 2014

On the weed

I got a marijuana prescription today,  and duly sent off my registration package to CanniMed. In a week or so I should be able to order some from them. They are one of the only two legal sellers that have the variety of strains that are most likely to do what I need to alleviate pain, help me sleep and perhaps even improve my energy levels.  The prescribing doc told me I would probably benefit from two strains,  one high in CBD, one high in THC. I'll let you know how things turn out.

Saturday, March 29, 2014

Springtime... NOT!

It was great getting away from the cold for a while, but the way this winter has gone, I wish we could have been away for 3 months, not just one. Since I've gotten back, I've felt like a semi-prisoner in the apartment: it takes a strong motivation for me to risk falling and breaking a leg or hip on that ice out there. Mary will be retiring this summer, so maybe we'll stay away longer next winter.

My left-side weakness and poor motor control continues to worsen, though now that my bursitis has long gone and my kidney stones are no longer acting up (for now), at least I am able to do my physio, pilates and yoga - when I'm not too tired due to poor sleep. I've certainly seen improvements in some of my leg muscles and core due to the exercises I have been doing so, though actual symptoms are worsening, in some ways I'm coping better.

I'm waiting for the snow and ice to go to take delivery of my mobility scooter. They'll allow me to keep it in a storage room in the apartment building, so that'll be convenient. I'm hoping that they'll install a disabled-entry mechanism at our apartment front door so that I can get in and out without having to dismount.

The Baclofen is still helping with spasms, though perhaps it's getting to be less effective due to my spasms getting worse or my body being less affected by the drug. I'll be trying marijuana for the pain and to help sleeping - it was my neuro's suggestion. Actually, I've already tried some (a strain called Critical Mass) just to see if it helps (it does), but I'll be glad when I can order stuff that is guaranteed to have less THC and more CBD.

In one month it'll be 4 years since my CCSVI treatment in Poland.  I'll have to do a 4th anniversary update at that time.