National CCSVI Society

Here is a useful, well-reasoned article that explains why it makes good sense to believe that CCSVI may be causing some of our MS symptoms: see this NCS presentation.  We do need more unbiased research and fewer articles that shoot down the CCSVI theory without providing any real evidence.

CCSVI Dead? Not by a long shot!

As usual, journalist Anne Kingston does a good job of putting the recent negative press CCSVI treatment has been getting into perspective: http://www2.macleans.ca/2013/05/01/ccsvi-dead-not-so-fast/.

Wouldn't it be wonderful...?

If this therapy actually works, it could change everything for MSers... probably not in time to help people like me, but perhaps in time for the next generation: CCSVI Locator posting.

My symptoms and therapies

This is what I gave to my neurologist:

1.      Left Leg and Foot Strength and Control

a.      Leg – My left leg continues to weaken.  It feels like my muscles are not getting a strong and/or steady signal.  Sometimes the signal just seems to cut out completely for a second.  Of course, by now my left leg muscle have significantly atrophied, though I continue to work on them (see therapies below).

b.      Foot – I have a hard time lifting my toes, or to flex my foot upward (dorsiflexion).  If I use a muscle stimulator (walk-aide), it seems to work fine.  Depending upon the position of my leg, this symptom can vary quite a lot, from no movement at all to small movements and, last night, while lying on my back doing my physio exercises, suddenly it was almost normal for a little while.

c.      General Mobility and Falls – As a result of my weak left leg and footdrop, my gait is very bad and every so often my knee seems to just give out for a second and I fall or almost do.  When I stand or walk I have to keep my knee hyper-extended so that I don’t fall.  I use a brace for walking and a cane if I’ll be walking or standing for any length of time.  When I walk without a brace, when I lift my left leg my left foot turns inward.  My walking always get worse when I am tired, when I’ve had a few drinks, and for a few minutes after I’ve had a cigarette.

d.      Pain – Sometimes when I lay down for a nap, it is more due to pains (sciatic and lower back pains) than to fatigue.

                                                    i.     Sciatica – This seems to be primarily caused by my poor gait.  I’ve used massage and acupuncture to some effect, but the money has run out of Blue Cross for this year.  Yin Yoga seems to be helping a lot.

                                                   ii.     Back and neck pains – Probably often caused by poor gait, almost falls, etc, though I suspect that the lower back pain may be due to arthritis, as well.  Yoga may be helping.

                                                  iii.     Sharp small pains in groin – Not as bad as before Poland treatment, but still is there a few times a week.

e.      Spasms

                                                    i.     Spasms with no apparent cause – Sometimes in bed at night I get a “restless leg” that spasms every few minutes.  This is usually a problem for a night or two, then goes away for  week or two.

                                                   ii.     Spasms caused by certain movements of the spine – When I get out of bed in the morning or get out of a recliner or sometimes out of a chair, my left leg will spasm, with my toes pointed down very hard.  It is so strong that I feel that if I flatten my foot, I’ll tear a muscle or tendon.  This usually lasts for only about 5-10 seconds, quickly reducing over the next few seconds.  It often also happens when I lie down in bed (usually on my stomach).  Interestingly, it sometimes happens when I yawn or sneeze.  The spasm sometimes occurs if I step in cold water in my bare feet, or if I step on a rough object in my bare feet.

2.      Left Arm and Hand Strength and Control

a.      Grip Strength – Tested at CBI, my left-hand grip strength is 2/3 of that of my right hand (60 instead of 90).  Generally, my wrist and my two small fingers seem to be weakest.

b.      Endurance – More noticeable than grip strength is my poorer endurance in my right arm and hand.  I can hardly hold a grocery bag of medium weight for any time at all, and if I hold both arms out in front of me, my right arm (and fingers in my right hand) aren’t able to stay up and straight out nearly as long as my right arm.

c.      Control – I drop objects out of my fingers in my left hand all the time.  I have a hard time holding a fork straight when I’m eating.  I have a hard time holding a medium-sized pot or saucepan for any time at all.  When I put my left hand on a desk, I can hardly lift the two small fingers.  I have a hard time hitting the appropriate keys on the keyboard with my left hand.  I have a hard time buttoning my pants and am almost useless with button shirts again.

                                                    i.     All of these symptoms get worse when I am tired.

                                                   ii.     Interesting note: When swimming, as I’m reaching the end of the pool and am running low on oxygen, my left hand curls up so much that it is almost useless for taking a swimming stroke.

d.      Note: I feel that my right hand is getting more clumsy over time, but it’s still much better than my left hand.

3.      Both Hands Numbness and Sensitivity – These symptoms have remained about the same (perhaps slightly worse) since 2004.

4.      Fatigue – Overall my energy levels continue to be much better than before I went to Poland.  What fatigue I do have often seems due to ongoing low-grade pain.

5.      Sleep – My sleeping is usually OK, with the help of a sleeping pill (or, about every 2 weeks, 2 sleeping pills), unless my left leg is very cold (fairly often) or spasming (rarely).  There was a week or two when I seemed to be waking up tired, but that may have been due to a bug going around.

6.      Balance – My balance continues to be good since my Poland treatment.  Sometimes its hard to tell if a trip or fall is due to balance or my left leg, but when I test just my balance, it continues to be much better than before Poland.

7.      Bladder Function – Continues to be better than before Poland, and I continue to not take pills for it. I DO make sure that I go to the bathroom before going out because if I don’t I always feel like I need to after walking a bit and getting into the cold air.

8.      Bowel Function – Continues to be good since Poland treatment.

9.      Cold left foot – Especially during the winter, my left foot and lower leg get so cold they throb and even with a hot pad it takes forever to fall asleep.  It may be better if I have been doing lots of walking or swimming.

10.   Left foot bloating – More rare than cold foot, but when it does happen (esp on flights), it happens at the same time as cold foot.  Pressure socks help a lot.

11.   Cognitive Function and Brain Fog – Sometimes I forget what I was about to do, but it’s just a little more severe than when I was younger.  A few weeks ago I was waking tired, seemed to have a pressure in my head, and seemed to have cog fog, but that may have just been a low-grade bug I had.

12.   Mood – There are times when I do feel frustrated and down because of all of my inabilities and pain and so on, but overall it’s still better than before I went to Poland.

13.   Therapy and Exercise

a.      Physio: I was seeing a private physiotherapist until the Blue Cross money ran out, but she did show me a lot of good exercises to do at home, w`hich I do about 4 times a week.  I’ve been referred to the Stan Cassidy Centre for work on my gait, but its well over six months and I still don’t have an appointment.  I get the feeling that, since I have MS, they consider me a chronic case and so not fulfilling to work with.

b.      Pilates: I started Pilates in January and it may help with some of my asymmetrical strength problem.  I see her every two weeks or so and do a home routine about 3 times a week.

c.      Weights: Given all the other things I’m doing, I’ve cut down weight-training to one or two times a week.

d.      Swimming and Water Physio – About 13 lengths and then a 10 minute water-based physio routine that I was shown how to do at the YMCA.  I do this about 5 to 6 times a week.

e.      Biking – I’ll be starting this again when the weather allows.  About 25 hard minutes, usually 3 to 4 times a week.  Probably something else will go down in frequency when this starts up.

f.       Yoga – I go to a Yin Yoga class two times a week,  I find it very helpful for the pain, and is helping me get more limber.

g.      Massage and Acupuncture – This was helping with some of the sciatic and back pain, but the Blue Cross coverage has run out.

Visit to my neurologist three years after CCSVI treatment

I had an appointment with my neurologist today, almost three years after my CCSVI treatment in Poland.  I reported my worsening mobility due to my weak, difficult to control left leg), but that my benefits from CCSVI treatment remain: better balance, more energy, autonomic function improvements.  She showed me the MRI done the other week, and said my worsening mobility may be related to what might be some new small plaques on my spinal chord.  I'm still on the list to see a neurosurgeon in case he can do anything about the narrowing in my spinal column in my lower spine.  Otherwise we talked about pain management and possible solutions for my leg spasms.  I mentioned that Yin yoga semed to help a lot with the pain, and she agreed that it was a great idea to continue with that.

I'll post, separately, the report of my symptoms and treatments that I gave to my neurologist.

Positive CCSVI Study

I don't believe this was a double-blinded study, but they show no complications and significant benefits of CCSVI treatment for a significant percentage of 72 MS patients: Phlebology Journal article.

Sham procedure

While the the article itself (like many others lately) tends to focus on the non-findings of the small BNAC study, it's worthwhile going oin to the comments, especially those from Dr. Arata and Carol: NY Times Blog.

Lasts again?

My left leg and arm continue to deteriorate.  I've just come back from a wonderful visit to see friends and eat great food and see great sites in Thailand... but for how long will I be able to do things like that?  As it was, there were a lot of things I was unable to see and do, though with the help of my great friends and wife, I didn't feel as left out of things as I could have.  Now that I'm back, I'm back into my regime of swimming, physio, pilates, yoga, working out... all with the hope that I can slow down the effects of the (apparently) relentless deterioration.  *sigh*

Still struggling...

Nothing much new to report from my side... I continue to work out regularly (swimming 4 to 5 times a week, yoga once or twice a week, Pilates with instruction once a week plus practice at home 3 or 4 times a week, physio very few weeks with practice at home three  or four times a week, then usually a workout at the gym whenever I haven't done much of the other things on a particular day.  Nevertheless, my footdrop, spasm and general left-side weakness is still be getting worse - slowly.  It's kind of hard to do all this just for the sake of not getting worse as quickly, but that's life with MS, for many of us, in any case.

Hormones and MS

Here is new research that supports an older idea, that increasing hormone levels may promote remyelinization: http://www2.cnrs.fr/sites/en/fichier/cp_sclerose_english.pdf.

Given that hormone (or pseudo-hormone) therapy is probably much cheaper and less dangerous than the drugs out there, many or most of which are of questionable value, it would be wonderful if this were found to work in MSers, perhaps even those with SPMS and PPMS.