Almost Two Months of Hell

On September 24th I was taken to emergency at the DECH in Fredericton with acute back spasms. After a week of diagnoses and painkillers, I was taken to the neurological unit at Saint John Regional Hospital. On October 4th they operated on my back, removing an epidural abscess caused by streptococcal infection. After some healing and then physio in Saint John, I was brought back to the DECH for a few days, getting home on October 20th. Since I've been on a antibiotic pump that gives me a megadose of penicillin every four hours, with extramural nurses coming to our apartment to refill it every morning. As of last night, I'm finally free of that!

The infection really ramped up my MS symptoms, to the point where I was not even able to transfer myself from one chair to another. Since the surgery I've gained some of my strength and balance back, but I still have to use a walker to get around, which means I’m still much worse than I was before I was infected. In particular, it really feels like the vertebrae in my lumbar region [where the surgery was] are rubbing against my spinal cord causing much more spasticity in my walking. I've been wearing a back brace when I'm sitting up in a chair or walking around for any distance, but I don't know that it's really helped reduce the spasticity, especially now that my back is somewhat stronger. I'm hoping that, when my healing is finally done, I'll be back to being able to do what was normal for me before the infection.

On the bright side, I can always hope that the surgery has reduced the stenosis in my spine. Certainly my hip and sciatic pain (and some other symptoms) are way less than before my surgery. I don't know if that is due to surgery or just the fact that I'm not moving around much these days. Guess I'll have to wait and see.

Between the infection and painkillers, I was in a fog for most the time that I was in the hospitals. I hardly even remember my daughter’s first visit (before surgery). I'm sure glad that I got home before my son left for his teaching job in China, and that my daughter had a second opportunity to visit us at home.

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? :-)

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.

Simvastatin

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?

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.

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.

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.

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.

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.

It’s Not the Disability, It’s the Unrelentless Progression

Another good article: "It’s this damn worsening disability, this insidious wasting away that threatens to shake my resolve. Whatever I do, it’s never enough. MS cannot be placated. It demands so much of me, and then it demands more." Enjoying the Ride article.

Three years and 9 months of relief

Saw the urologist today. My plumbing is so much better than the first time I saw him (just before my Polish liberation treatment in 2010) that he says there is no need for my annual checkup any more. A few months after my CCSVI treatment I stopped taking the meds he had me on. Over the years since I first saw him, my urological symptoms have improved. That, my reduced fatigue and better balance all improved after my treatment. A coincidence? I don't think so. Even as other symptoms (especially strength and control of my left arm and leg) continue to worsen, I am still reaping the benefits of my trip to Katowice.

With daughter Anna, while on our multi-vineyard tour of South Australia at Christmas and New Years. Good thing my plumbing works better!

Status: New Normal

It's been six weeks since I last posted, mostly because we were in Australia and New Zealand to spend Christmas and New Years with the kids, not because there was nothing to report. I wonder if I still have any readers?  In any case, assuming there are still one or two of you checking in once in a while:

Kids collaborating to push me up a big hill in 

South Australia... amazing how a small incline 

can make pushing SO much harder.

• In two weeks it will be exactly 10 years since I was diagnosed: February, Friday the 13th, 2004. A lot has changed in that time.
• Strength and control of my left arm and leg continue to deteriorate, and the numbness and loss in dexterity in my right hand is getting a little worse. I walk with poles or a cane outside of the apartment. In Oz and NZ I was wheeled around in a rented wheelchair, mostly by our kids. Winter, for me, is hell: the icy parking lots are a fall and broken leg waiting to happen.  The idea of spending winter in a climate that has no snow or ice looks better all the time.
• My left leg swells in warm weather (and on flights), and turns to ice in cold weather. I would say that this has gotten worse over the last year.
• I had a shortness of breath while in Australia and NZ, and it has continued since I returned. Its like the feeling you get when you've had too much turkey at Thanksgiving: like your lungs can't expand enough to take a full breath.  It reminded me of the time on a trans-Pacific flight in the 1990s when I got short of breath, either because of an allergy or because the pilots had lowered oxygen levels (to save fuel). Some (most) of the times I've felt this, it was accompanied by that old "MS hug" feeling that I haven't noticed often since I returned from my treatment in Poland (almost 4 years ago!). My GP says my lungs and heart sound good, though he'll have more tests done.
• On the other hand, and speaking about the results of CCSVI treatment in Poland, I continue to have good balance and my autonomic functions remain greatly improved.  Now sometimes my balance seems worse because I trip over my semi-useless left leg, but that is simply because it's hard to walk with such an appendage.  My energy is also still much better than before I went to Poland, though this winter I seem to want to take naps after lunch, and some afternoons that turns into hours-long hibernation.  However, it isn't (usually) accompanied by that heavy, lethargic, stunned feeling I used to get before my "Zamboni" treatment.
• I continue to do physio with a therapist who is really interested in trying to help me get the most out of my diminished capabilities, and Pilates with an instructor who is equally engaged in my situation. I've not gone to yoga since coming back from vacation, but that's because the icy hillside parking lot at the yoga place is just too daunting. I didn't do any of those while on vacation, but am now (slowly) working my way back into my daily routine of physio and/or Pilates and/or yoga.



The scooter I'm considering is the Pride Pursuit XL, pictured here.

• We've decided to get me a scooter in the spring: I'm bowing to the reality that, except for biking, there is now way for me to get around any distance without a car. This way, I'll be able to go out for "walks" with Mary and even on longer bike rides (I can only bike for about a half hour). I should have done this last spring, and not had a summer of reduced activity. 
• As far as drugs go, I'm still on arthritis, spasm and nerve pain drugs that seem to be working (at least making things better than they otherwise would be). After discussing it with my GP, I've decided to stop taking Lipitor (for my cholesterol), at least for a few months. I've been taking it for over ten years, and my doc agrees that, given my other problems, chancing higher cholesterol while testing to see if any of my "MS" symptoms get better after dropping Lipitor is a worthwhile risk.
• There has been a lot of news on the MS research front: results both supporting and denying the existence and/or treatment of CCSVI, stem cell research that looks interesting, and even our old "friend" Dr. Freedman is publishing results of his multi-year study into his technique of killing the immune system, then building it up again using bone-marrow cells. A lot to digest, but If I have any thoughts on it, I'll put them into a future post.
• Finally, I should note that I am now on a disability pension from CPP and could have been since I retired. Still, once I was on it, they also gave me 15 months of "back-pay".  Besides giving me a little more than my "reduced at age 60" CPP, it also means that when I get back on regular CPP (at 65), it won't be reduced.  Since getting it I've realized that a) I only found about it by accident and b) there are a lot of other people out there who don't know about it, who should. Spread the word!