Tuesday, December 17, 2013

Bacoflen and Nabilone are working

I started on Nabilone this summer (for my sciatic nerve pain) and on Baclofen (for spasms) this fall. The Nabilone has definitely made a difference in my sciatic pain, noticeable after several weeks.  This is the second time I've tried Bacoflen: the first time I gave up after a couple weeks because I felt that it made me feel drowsy without any noticeable benefit, but this time it really seems to have made a big difference in my spasms. Do Baclofen and Nabilone make me drowsier?  I'm not sure,  but so far I would say that the benefits outweigh the side effects.

Monday, December 9, 2013


Here is a study that found improved cerebral blood flow after CCSVI treatment: Phlebology article

Monday, November 18, 2013

Friday, November 15, 2013

Dr. McDonald Sues Dr. Freedman

This is quite unusual: Dr. McDonald sues Dr. Freedman for libel (National Post article). Dr. Freedman is the neuro who has been vehemently against CCSVI, while Dr. McDonald is a surgeon who believes that occluded veins should be opened regardless of any relationship to MS.  Malicious intent is pretty hard to prove, but I'm glad that Dr. McDonald is standing up to a bully.

Friday, November 1, 2013

Jugular Blood Flow in MS Patients

Here is a link to research that seems to show that MS patients have a high prevalence of impeded blood flow to the brain: http://www.jvir.org/article/S1051-0443(13)01393-6/abstract. I hope they use the same technique to see how different that is from blood flow in patients without MS.

MS and Fatigue

As a MS blogger, I regularly receive notices of research, treatments, "cures", etc. When I see something worthwhile, something that may not be total BS, I pass it on:
For your blog, three recent studies have been published focused on the cognitive side of multiple sclerosis (MS).  Each study was published by researchers at Kessler Foundation (West Orange, N.J.) —studies that could eventually lead to cognitive therapies being approved for reimbursement by insurers.

Many know that physically, MS can cause muscle rigidity, pain and paralysis.  Lesser known are the cognitive effects -- including fatigue, trouble with memory and speech.

One Kessler Foundation study, funded by the National MS Society, found that people with MS performed worse on processing speed and memory tasks during warmer outdoor temperatures versus during cooler outdoor temperatures. 

The second study, also funded, in part, by the National MS Society, sheds light on cognitive fatigue in people with multiple sclerosis.  Cognitive fatigue is fatigue resulting from mental work rather than from physical labor. 

Meanwhile, the third study provides the first evidence for beneficial effects of aerobic exercise on brain and memory in people with MS.

Interested in learning more?  Please email me or call me at (856) 296-0741 to discuss.


Adam Dvorin
Winning Strategies PR
A small piece in a large puzzle, but may lead to something useful someday.

Friday, October 25, 2013

Book on MS

Here is another book on living with MS, but caution: the book is sponsored by a drug company. If anyone reads her story, let me know what you think:
An MS patient advocate named Kristie Salerno Kent has recently completed her memoir: Dreams: My Journey with Multiple Sclerosis. Her book, available free at www.DreamsTheEbook.com, is an inspirational example of the triumph of the human spirit and choosing to live life to the fullest after a diagnosis of MS. She is also now touring and singing at many MS- focused events around the country.

Dreams has been positively received by the MS community. As one reviewer wrote:

“Kent tells her story so candidly that you can’t help but to hope the end of ‘this’ part of her journey ends well and, when she shares the ups and downs, you admire her for her strength, nod in recognition of her denials and finally smile about her using her talent as an MS ambassador.” Examiner.com.

Trevis Gleason who has an MS blog on Everyday Health also reviewed her book and said:

“I found Kristie’s honesty about her search for explanation while simultaneously trying to avoid the much sought-after answers refreshing.  I too could relate to explaining away or ignoring until the disease would no longer be disregarded.“

Might you be interested in featuring a “guest post” from Kristie on your blog that details her experience with MS? You can also post excerpts from her book on your blog as well. And she is available to answer any questions via email.

Thanks very much for considering and have a great day,

Andrea Coan

Berry & Company Public Relations, LLC
57 E 11th Street
6th Floor
New York, NY  10003
T: 212 253-8881     F: 212 253-8241

Diets for Autoimmune Diseases

I have not read this book, but offer it as something that might be of interest MSers:
As one of the over 50 million people in the U.S. burdened with auto-immune disease, Mee Tracy McCormick decided to fight back when this debilitating disease cost her all quality of life and left her near death. In her new book, My Kitchen Cure, she shares her amazing discoveries on the healing power of food! More than a cure for a personal ailment, this TV cooking personality has created a lifestyle that will help anyone suffering from any form of auto-immune disease.

Please read the following press release and let me know if I may schedule an enlightening interview with Mee, or if I may forward a copy of her book for a review. Thank you.

Gretchen Muro


My Kitchen Cure: Conquering Chronic Autoimmune Disease and Cancer with the Healing Power of Food

Nashville, TN, October 24, 2013 - In her newest book, My Kitchen Cure: How I Cooked My Way Out of Chronic Autoimmune Disease and Prevented Cancer with Whole Foods and Healing Recipes (MeeLee Publishing – June 2013), Mee Tracy McCormick chronicles her journey from near death to a vital, healthy woman with two children, husband and a career that includes going into communities and teaching what she learned about turning around a health crisis.
Her story starts with hereditary Crohn's disease, an intestinal ulceration, a diagnosis of cancer waiting to be confirmed, and debilitating daily pain that knocked her down and left her teetering at a painfully thin 96 pounds. Medical tests, treatments and medicines that threatened to kill her before they cured her had backed Mee into a health crisis corner.

Not knowing how to proceed or even how to cook, Mee took it upon herself to transform her kitchen into her personal healing "laboratory.” She didn't know it then, but she understands now that by learning about the healing power of food, she was creating something bigger than a cure for a personal ailment. She was creating a lifestyle… a new way of being… a movement…. A REAL FOOD LIFE that could benefit everyone and, most notably, the 55 million people in the United States alone who suffer from an auto-immune disease, of which Crohn's Disease is one.

More than just "preaching” about this REAL FOOD LIFE, Mee has taken it upon herself to teach what she knows in public schools to private homes. She has set up Real Food Makeover Community Kitchens in Nashville and Los Angeles, sometimes working with card tables and butane burners, cooking with small groups or upwards of 150 people at a time. More importantly, she includes the less privileged in her mission.

"I know now that going through such challenging health issues that I still have to pay attention to, that there was something more I needed to do,” says Mee Tracy McCormick. "And, when I hear someone say that they were able to cut down on their diabetes medication or how they lost 40 pounds by just giving up foods that come in a box or can, it makes my heart sing.”

Written in three parts, My Kitchen Cure recounts:

•    The Who: Raised in Appalachia on a diet of chipped ham and ketchup sandwiches by a single mom who died young of hereditary Crohn's Disease; suffered herself for 10 years or more from debilitating abdominal pain and weight loss; married and started a family, but almost lost one daughter in pregnancy due to complications caused by her condition; eventually found herself doubled up in pain on the floor for 48 hours alone with her two young girls in the Mexican jungle; moved with her husband and family back to their ranch in Tennessee to get medical help; made the rounds to doctor after doctor whose solutions entailed dangerously invasive tests and mounds of daily drugs; finally found her answer in her kitchen; then created The Real Food Makeovers, going into her Nashville Community and shifting food deserts to food oases.
•    The What and Why: Part two covers topics like, "What is autoimmune disease,” ”Everything you need to know about sugar,” "Dairy, to eat it or not eat it,” What's real & what's fake in the food world,” and "Feeding our kids real food every day,” to name a few.
•    The How: The kitchen staples and equipment that a REAL FOOD kitchen should stock, along with 162 pages of recipes for breakfast, lunch, dinner, dessert, and everything in between.

Mee Tracy McCormick is a Real Food and Autoimmune Cooking Expert, TV cooking personality, a Food Makeover Consultant, a Community Food Advocate and the author of My Kitchen Cure: How I cooked My Way Out of Chronic Autoimmune Disease and Prevented Cancer with Whole Foods and Healing Recipes.

For more information on Mee, her REAL FOOD LIFE, her REAL FOOD MAKEOVERS and her book, visit www.MeeTracy.com. Her book is currently available on amazon.com where it is fast being lauded as the go-to book for autoimmune disease.



Community Kitchen Event featuring Mee Tracy McCormick
Music Row
Integrative Life Center
1104 16th Avenue South
Nashville, TN  37212
Saturday, Nov. 23, 2013 – 3-5 p.m.

McCormick will be hosting a community kitchen, where more than 100 people will learn to use whole foods in their daily cooking to support wellness.  


Joan Borysenko, PH.D: "Mee is devoted to you, which is what this book is all about. You will read about devotion in action – how she goes into people's homes, listens to their stories, cleans out their cabinets, creates a healing kitchen, takes them shopping, and teaches them how to cook. The best part is that they heal. Mee is healing whole communities through her outreach to schools, churches, and well, all of us, through televised cooking lessons that are so delightful you'll want to run right out and round up the ingredients. Enjoy. Heal, and go out and spread the word!”

Carolyn Coker Ross, M.D: "Mee has written a book with heart and soul that takes us through the colorful pages of her adventurous life. The book shines a light on the pain and suffering she endured for years from her undiagnosed and poorly treated digestive disorder. This pain led her on a search for answers…[Book] is remarkable for its honesty and how it showcases her own strong, resilient personality…also remarkable because it shows that the path to TRUE healing doesn't start and end at your doctor's office or with a prescription. True healing happens when we listen to the still small voice in our hearts that leads us to our own personal path to healing, even when it deviates from what may be considered the norm or takes us to places that challenge us to look outside of conventional authorities on healing. Mee's journey to healing is fun to read about and chock full of useful information that will help many who read her book.”

Christiane Northrup, M.D., ob/gyn physician and author of the New York Times bestsellers: Women's Bodies, Women's Wisdom and The Wisdom of Menopause: "My Kitchen Cure is chock full of user-friendly, health-enhancing information. I highly recommend it.”

Monday, October 21, 2013

A Month of Pain

Just over a month ago, I started having a pain in my left hip whenever walking or even just turning over in bed. At first I didn't think much about it, since my poor walking puts a lot of stress on that left hip and lower back, but now this new pain was making the walking worse and also causing me to fall: a shot of pain would make it suddenly impossible to put any weight on my left leg and down I'd go.  However, after a week of excruciating pain, I got into the Doc's office for a diagnosis and treatment.  The diagnosis was bursitis and the treatment was a shot of cortisone.  The cortisone worked fairly quickly: most of the pain was gone in about 5 days.  However, I was left with a continuing pain in my upper left glute and left quads, especially apparent when walking, standing, or turning over in bed. My physiotherapist and doc say those are probably muscle strains made worse while I had the bursitis, and that letting them heal is the best thing to do. In the meantime, the ongoing pain seems to be making me feel tired all the time: I can't fall sleep well at night, but take naps during the day are a respite from the pain/discomfort.

The upshot of all this is that I haven't gone swimming for over a month (worried about both getting into the pool safely, then be able to do the crawl properly given my glute/groin pains).  I've only biked a few times because I'm usually just too tired to be interested in going biking. I'm only now getting back to my physio, pilates and yoga routines.

A month of significantly reduced quality of life. I sure hope I can get back into my full regular exercise regime again soon.

Saturday, October 12, 2013

Anne Kingston, CCSVI and MS

Here is another great article from Anne Kingston:http://www2.macleans.ca/2013/09/24/time-to-liberate-liberation-therapy-from-ms-3/.  There is also a Facebook link to all of her articles on the subject:https://www.facebook.com/notes/ccsvi-ivcc/anne-kingston-of-macleans-magazine-articles-on-ms-and-ccsvi/415901201807268. I'm going to make sure I have that bookmarked, because it's a great source of information, tracking the evolution in thinking about CCSVI.

Thursday, September 19, 2013

Getting older and MS

Another good blog post from Mitch: http://www.enjoyingtheride.com/.  

Saturday, September 7, 2013

On the Cannabis - Part 2

I've been on nabilone for over a month, and I'm quite sure that is really helping my sciatica (and perhaps other neuro pains). I saw the difference in a couple of weeks, but waited until now to make sure that it wasn't just coincidence that my sciatic pain has greatly decreased.  However, it's been over a month: I haven't this long of a respite from the pain in years, so I'm quite sure it's the nabilone that's doing it.  So far no side effects except, perhaps, some increased lethargy. Wonder what some real weed would do?

Saturday, August 17, 2013

Physio, Pilates, Yoga, Swimming and Biking

A very focused physio regime along with a specially-designed Pilates program seem to be slowly paying dividends with respect to strengthening some of my muscles that are very weak, particularily in my left leg. It's good to have health service providers that really want to make things better for me now even though the long-term prognosis is for more deterioration.

On the Cannabis

I've started using a precribed synthetic cannabinoid called nabilone to try to help me with my chronic pain, particularily my sciatica.  I'm on the second week of a three-week ramp-up period for the drug. My sciatica has been better lately, but its hard to say if the drug had anything to do with it since it varies day-to-day anyway. It would nice to have something for chronic pain that doesn't have bad side effects or sap all my energy.  I'll let you know how it goes.

Tuesday, July 9, 2013

Cognitive Benchmark

Today I got the results for the set of cognitive tests I took about a month ago. I passed (hehehe). In any case, comparing these results to the results of the same tests done 3 1/2 years ago (just before my "liberation"), none of my measures (memory, cognitive performance, etc) had deteriorated.  So my left-side weakness is getting worse, but my brain hasn't changed.

Friday, June 21, 2013

Reply to anonymous prof

From my perspective, CCSVI treatment is most likely to help if you are afflicted with balance, fatigue and autonomic function problems.  Whether it helps anything in terms of long-term disease progression is anybody's guess.  Don't believe those who say they "know" it is a hoax OR that they KNOW it is a "cure" for MS: the international Cochrane review meta-study of CCSVI research says that the jury is still out on any claims, be they positive or negative.  Note: I collaborated on the write-up of the meta-study.

Wednesday, June 19, 2013

The Importance of a Good Physiotherapist

While the strength on the left side of my body has continued to deteriorate, I'm not giving up without a fight. Besides Pilates, yoga, swimming and biking, I've been seeing a new physiotherapist who seems as interested as I am in trying to make the best of what I have. She is working hard with me in trying to figure out what exercises I can do to reduce the impact of my disabilities and give me the best possible quality of life. In fact I have already seen some improvement in some of my capabilities and this has given me hope that my mobility may improve, or at least not decline as fast as it may have otherwise.

I have had experience with some physiotherapists and healthcare providers who, upon knowing that I have MS, appear to have a rapidly declining interest in working with me. In some ways I can't blame them, since it must be hard to work with someone who is almost certainly going to get worse despite your best efforts, but it still makes me angry to think that I am in worse shape than I might have been if I had had the right physiotherapist three years ago.

Friday, May 31, 2013

Letter to Atlantic Chapter of MSSC

Chris has put together a well-researched open letter to the head of the Atlantic chapter of the MS Society of Canada: http://goo.gl/5VZRU.  While I don't go out of my way to put down the MSSC, such as when they mention that they are going to do a "Walk for MS", when they do ask my opinion I do let them know that a) the MSSC has a very high proportion of administrative costs, b) that the MSSC has gone out of its way to be obstructive to the study of CCSVI treatement and c) that a good proportion of its money comes from drug companies and d) much of their non-administrative money goes towards testing drugs from these companies.

Thursday, May 23, 2013

An interesting perspective from an angry MSer

While not all true for all MSers (so what is?), this diatribe will describe some of the feelings that hit most of us at some time: http://mstruths.blogspot.ca/2011/03/things-you-probably-dont-know-about.html.  And take the time to read the comments.

Thursday, May 2, 2013

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.

Wednesday, May 1, 2013

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/.

Saturday, April 27, 2013

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.

Tuesday, April 9, 2013

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.

Tuesday, March 26, 2013

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.

Monday, March 18, 2013

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*

Sunday, February 17, 2013

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.

Wednesday, January 30, 2013

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.

Friday, January 18, 2013

Survey of my readers

Wow!  It's been well over a month since my last posting... and according to the pageview statistics I still haven't lost all my readers!  Sorry for being so quiet, but besides enjoying the holidays (remember that we of Ukrainian ancestry get to enjoy TWO Christmases and TWO New Years in the space off three weeks!), I've been occupied with new physio activities and am busy with some volunteer activities.  With respect to physio, beside my usual (working out, swimming and yoga), I'm trying out Pilates (private lessons) to see if I can improve the strength of my left arm and leg - and so perhaps improve my mobility.

In any case, I have a couple of questions for my readers, one that was instigated by a friends question, and the other that came to mind because of my worries that an overseas trip I will be taking next month is going to aggravate my sciatica:
  1. Has anyone had experience with Lyrica, especially for sciatic pain?  I have a prescription, but after reading about side effects I'm not sure I want to try it.
  2. How many people have tried and/or are currently using marijuana for MS symptoms?  If so, what symptoms are you using it for, what form are you taking it, how effective is it (especially for pain)?
You can reply to my blog or e-mail me directly and I'll post any responses I receive as anonymous contributions, especially since we have a block-headed government that still continues to harass marijuana users.

Also, if you have any other pain mitigation techniques, I'd love to hear about them.  When I get some responses I'll also let you know my success with my two favorite methods: yoga and whiskey!