Thursday, January 30, 2014

Was it something I said?... Cheerleaders get no respect

I am always wanting to post here, but life as a working mom with MS is ruled by interruptions, too many tasks and not enough time! And, quite possibly, time-sucking diversions like Facebook (ha!).

However, I did just post this response (below) in a closed group in FB to a fellow MSer regarding the challenge of wanting to be inspiring to others and still being taken down for it in the forums. This MSer is one who runs marathons and who is always actively evangelizing the idea of staying active as much as possible.

And it's great advice, though not always well received.

This happens a lot, actually: people write "positive thinking" comments or posts on their timelines (hmmm, guilty as charged!) and the trolls the disenfranchised and unhappy come out in force to let you know just how pointless it is to be hopeful.

Here's what I had to say about that, with identifiers removed for privacy. Sometimes I spend my blogging eloquence on posts like this and then I think, dag, I could use that at my blog. So here goes. This is slightly revised because, dagnabit, the editor in me can't help it.

Enjoy your day, however it comes to you!


[Dear X:]

Being a cheerleader and encouraging more activity should not be something you apologize for. "Do what you can" is a great approach and you shouldn't be criticized for encouraging that simply because you are more able-bodied.

are definitely days where I wish my invisible symptoms were more obvious (as in the presence of a wheelchair) just so I could drive home the message that, listen, people, I *do* have limitations and I'm *not* faking it. This is very hard to get across to people who only see a physically functional person and not the terribly fatigued, brain-fogged, migraine-riddled and randomly incontinent person I am. I am a writer and work in medicine, and my intellect constitutes a huge part of my identity; for me, losing bits and pieces of my intellectual abilities can be terribly demoralizing in much the same way losing one's ability to walk can be.

I think many times there are peers among us who are depressed and no amount of positive thinking is going to reach them, bless their hearts. Depression is a recurring theme in my family and I have been there, so I recognize its many faces. These MSers might lash out or express their own kind of judgmentalism by accusing others of "having it easy" or being "holier than thou" or complaining "easy for you to say!". Part of that comes from being visibly afflicted, which in our culture means they are more likely going to be treated differently ("put inside a box" is a great term: the same box with other weak, broken, ineffectual people who have less power in the world). That means their identity has been reduced by others to the visible symptoms of their disease and they cease to be the whole person they are even to their most cherished loved ones. Of course, not everyone is this horribly insensitive to the plight of MSers, but many many are. People can be cruel, though I still insist that this is their own soul's blind spot and not something that we, as MSers, should spend any of our very precious energy trying to fix. 

When I am having great days where my energy is 90% or better, my mind is clear, my words come easily, my head is light and unfettered by pounding, nauseating pain, and I am not worried about finding a bathroom in 30 seconds or less (!), I am so very grateful to not be someone that others can "put inside a box." 

For my part, I do yoga (which, as [Y] points out, is wonderfully adaptable to all kinds of ability), hiking and fast walking on rural roads with hills and valleys. I have severe issues with my wrists, so many of the poses I do in yoga (down dog, anybody? side plank?) are very hard to do for me because of the pain and numbness and pressure. The strength is there, but the support is lacking. Still, a good yoga teacher can give you options that work so that you can still get the benefits of the pose, as well as the breathing. Yes, there is pain sometimes, and numbness, and fatigue beyond belief even during slow walks. I remember seeing a bench alongside a park trail and really really really wanted to just lay down and take a nap, in the middle of my walk, because my head was so "thick" and my energy was so low. Who does that? LOL And the whole issue of incontinence is always a problem because I like to hike and walk out in nature where there are no bathrooms! Let's just say, I'm a girl scout now and try not to give myself too much grief if the worst happens. Not my fault! It's the damned MS.

So I just take it one effort at a time (not even one day at a time, because the status of my health seems to change hourly!). On a low energy day, I just laugh and say, Oh well, today is not my day to be 100%!, and on a high energy day, I laugh with joy that I can do everything I want to do. Most days I float between these realities and so I just laugh (unless I have a migraine, then I hibernate).  

[X], I agree with you that for many of us, the motivation is there, to do what we can as long as we still can. There is no guarantee we will be in this same able-bodied place in the future, and that is perhaps MS's biggest curse of all, this uncertainty we must live with while trying to get on with our lives. And what we are doing when we "do what we can" is making a choice: to maximize our health, to live without regrets, to be an active soldier in the war waging inside each of us, to be a whole person. But it's so very hard to care and to make the effort when our abilities don't match our will ("the spirit is willing but the flesh is weak"), so I imagine any pushback you get from those who think you are being Pollyanna about MS because your gift of athleticism is apparent and you are making the most of it is due mostly to the fatigue that comes with their struggle to do even the most simple tasks. And boy that can be very depressing and can color every action one takes without a strong mind and heart to fight back.

So try not to take it too personally if others aren't as gung ho to your message. We are all bringing different levels of ability and emotional energy to the discussion and sometimes it means others will want to dowse your flame because of it. As Kent M. Keith says in his Paradoxical Commandments, " Do it anyway." For those who are receptive or who need hope, your words are not lost, ever.

[P.S. By the way, I have Keith's PC posted on my wall as a poster... words to live by, no matter how able you are!]

Friday, January 10, 2014

Need a New Year's Resolution? Support the search for a cure

My case of MS isn't all that bad. Not when compared to what others must go through. I live a mostly normal life as long as I don't overdo things. I work. I exercise. I am a parent and a wife. I can move around and speak mostly in complete sentences and see. I don't have to wear a diaper. I don't have to sit in a hospital with an IV in my arm (in fact, I never have). I have meds that will cover most of my shortcomings: usually something for migraine pain as needed, and daily help with fatigue, for instance, as well as OTC goodies like Imodium and GasX to get me through the stomach issues that sometimes come as side effects from my DMD.

But I'm well aware that this is not the case for many--those who are on disability or who are in the process of applying for it because they can no longer do the ordinary things that the rest of the world can do (and takes for granted). Like working, exercising, parenting, speaking and using the toilet. The curse of MS even excludes, for some, being able to use things like smartphones. Imagine having a disease that makes it impossible for you to use your Android or your iPad. Not being dramatic here.

This is why we need a cure: otherwise lovely, vibrant people with dreams and hopes and goals just like everyone else are literally enduring the slow shredding of their nervous system under attack by an immune system "gone wild." The frustration of watching one bodily system after another begin to do bizarre things ("word salad," anybody?) or slowly fail (everyone's favorite, incontinence... try walking that treadmill in the gym with this always in the back of your mind) simply cannot be appreciated unless you are one of the unfortunate ones who deals with this every minute of every day of their lives.

While many major illnesses like diabetes and heart disease--in some cases, even cancer--can be shown to originate in poor lifestyle habits (sedentary lifestyle, poor diet, drinking or drugs or smoking, for instance), MS does not happen to someone because they made bad choices. Perfectly healthy people with good lifestyle habits still come down with this devil of a disease. The need for research money is critical to finding a cure; studies require funding, lots of time, and lots of willing participants to make the possibility of curing MS a reality.

|| If you'd like to read a book about the current approaches to MS, you might want to try Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis by HL Weiner (2007).  ||

Below I've posted some links to recent news to show you what kind of headway researchers are making. It seems we are so close to a cure, and yet so far away. If you are putting together some New Year's resolutions this year, please consider donating to the cause of curing MS. MS is no longer a rare little disorder that somebody else gets; more than 2.1 million people suffer from this lifelong chronic neurological disease and without a cure, we won't be able to prevent it either.

Let me be frank: MS sufferers and their loved ones are hit up ALL THE TIME for money for a cure. Many of them cannot afford the expensive medications. Costs measure on the order of $55K annually for just one disease modifying medication; this doesn't even begin to cover the other meds MS sufferers need for pain management, alleviation of muscle spasticity and defense against debilitating fatigue, as well as for assuaging the discomfort of unpleasant side effects like flushing or flu-like symptoms or chronic diarrhea.

If you're a reasonably healthy person, it can be hard to imagine what it's like to have to take handfuls (or needlefuls) of medications every day just to function quasi-normally (in order to do something like go to work in order to just pay the bills). If you can spare some change to help support the search for a cure, please do so by clicking on one or more of the links below (and thank you).


Accelerated Cure Project ||
Accelerating research toward a cure for multiple sclerosis
Benaroya Research Institute

Multiple Sclerosis Association of America

Multiple Sclerosis Research Institute

The National Multiple Sclerosis Society
Tisch MS Research Center

Friday, January 3, 2014

Relief by flush... not necessarily a contradiction in terms

One intriguing side effect of the medication I'm taking (Tecfidera) is something called "flushing." This is more or less the same side effect I would get from taking Niaspan, a high-dose version of niacin (vitamin B3) often prescribed as an "old school" treatment for high cholesterol. 

Flushing consists of an intense itching that takes place just under the skin (very similar to allergic itching) and a companion reddening of the face and/or neck and/or chest. For me, the flushing mostly impacted me at the ears; the insides of my ears would get extremely itchy and my ear lobes and pinna would turn a deep red and feel warm to the touch. 

I took Niaspan for years and it was extremely helpful in lowering my cholesterol. I also took an extremely high dose (2000mg) which did not seem to bother my liver. At bedtime, I would take this dose with four baby low-dose aspirin, which help to attenuate some of the discomfort of flushing. I learned to ignore the side effect mostly and to simply tolerate it. Apparently I'm more tolerant than most, as I've heard horror stories from people who have tried Niaspan; interestingly, their tales of misery correspond almost too neatly with the same horror stories spun from others who are taking (or had to stop taking) Tecfidera due to intolerance issues.

Tecfidera, it turns out, does pretty much the same thing to me in terms of flushing, except that it makes my whole face red (actually, from the chin up, I turn magenta; from my chin down, I'm my normal sallow olive-skinned self) and the itching tends to spread to other extremities. Still, it's not usually too bad and maybe just once a month do I actually notice it. Since I take this medication not only at night (when I can sleep through this side effect) but also in the morning, I am always concerned I will be struck with flushing at an inopportune time. By and large, that hasn't happened. Once in a while, I might feel it coming on, but in the last six or so months, I think I've really only noticed it a total of six times (maybe more, but it wasn't extreme enough to be memorable).

I had an afternoon of flushing the other night, which surprised me with its severity. Luckily I was in a movie theater where nobody could see me. Then, the next night, it happened again and I even thought about taking Benadryl to counter the effect (which eventually I did when I went to bed as I was also having some congestion issues). 

I decided the next day to look into the mechanics of flushing. Is it a bad thing for someone with MS? A good thing? What exactly do Niaspan and Tecfidera have in common that leads them both to achieve this similar side effect? But first things first: What is actually happening to the body during "flushing?" 

Biology 101
Remember, there are arteries and capillaries. Arteries are the large vessels which carry lots of blood away from the heart at a very fast rate to all major sectors of the body, while capillaries distribute the blood (in smaller amounts, more slowly) from these main arteries to the body's nooks and crannies. Sometimes, the bottleneck of blood supply transferring from the arteries to the capillaries leads to inadequate blood flow, leaving some toxins to remain in the cells rather than be washed away by blood factors necessary for healing. 

However, if you dilate the blood vessels  (technically, vasodilation), they relax and expand to allow more blood to stream through and bring healing blood products to the cells. The cells can then flush out any resident toxins. The itchy warmth that occurs is caused by newly oxygenated blood flushing into the capillaries close to the skin as well as by the actual process of dilation that occurs in the blood vessels.

Dilating the capillaries can happen as a natural occurrence (as in an immune system response where histamines are released into the blood stream to deal with inflammation), or it can happen with some pharmacological help. Niacin's signatory impact on the body is through vasodilation. By opening up blood vessels, cholesterol in the body can be processed and moved without sticking to the walls of the vascular system and creating plaques that lead to chronic disease later.

It appears that Tecfidera activates a similar kind of flushing response in either the vascular system or fibers of the autonomic nervous system (or maybe both?), though researchers really can't explain how or why as of yet. I did learn that these ANS nerve fibers serve the sweat glands, which can lead to an effect called "wet flushing" (much like a hot flash, but not related to the female hormone, FSH), which is not the same as the "dry flushing" that occurs via vasodilation from products like niacin (see Nasr, Cleveland Clinic).

What's interesting to me is that I learned in my research that, between 1946 and 1959, thousands of MS patients were treated with a central nervous system vasodilator in a kind of therapy called "relief by flush." Apparently, histamine vasodilation proved to offer many MS sufferers relief from acute "flares" and virtually every kind of symptom (see Ganesh & Stahnisch, 2013). Inconsistency in research, the death of the leading researcher, Hinton Jonez, and the distraction of new drug research seemed to pull attention away from these findings. 

Lately, however, there has been a return to the notion of niacin as a potential remedy for MS after controversial treatments for chronic cerebrospinal venous insufficiency (CCSVI) began to make headlines in the mid 2000s. Though the jury is still out on the efficacy of "liberation therapy" for CCSVI, vitamin B3 has been resurrected as a potential helper and even shown in separate studies to offer "dramatic protection" against early stages of multiple sclerosis (Rhodes, Haacke & Moore, 2011).

Why this is relevant to MSers
Well... last fall, I stopped taking Niaspan. I was having some pretty serious "wet flushing" and, at age 48, I asked my PCP if he could check to see if I was in early menopause. I had a blood test, stopped taking my birth control pill for a month to see what would happen. Nothing changed, I still had the sweats, and the blood test came back negative. Then I stopped taking Niaspan to rule it out as the source behind my nighttime flushing. I continued to have it (and still do, though not all the time). Clearly the culprit is Tecfidera.

But what about the Niaspan? I completely forgot until recently that I wasn't taking it (with its companion baby aspirin) and now I wonder if my cholesterol has grown elevated without it. Hmm. One of my worst symptoms of MS has to be this underattention to detail that is not typical for me. I hate forgetting, making careless omissions. I think this oversight is one of them, and I hope I won't regret it later.

I'll be seeing my doc again later this month for annual tests and will be curious to get back my cholesterol results. But in the meantime, I think it's safe for me to go ahead and reintroduce the Niaspan, 1000mg at a time this week, bumping it back up to 2000mg next week. It seemed to be working for me before, and by the looks of things, all that flushing action it contributes to might end up being the perfect companion to my Tecfidera treatment.

And now, when I hear others complaining about the flushing side effect of Tec, I can offer them a glimmer of hope, that maybe the itching and redness and internal flushing is just proof it's doing its job, that there really might be some legitimate "relief by flush."

(Or maybe not. The jaded GenXer in me has discovered that many of my MS contemporaries seem more happy to wallow in their discomfort and complain rather than find a solution. Positive spirits like me just come in and ruin their day! LOL).

All I can say is that I feel very lucky to be able to tolerate the flushing I get from either drug. 

At any rate, stay tuned...

Citations & further reading

Brickner, RM. "Phenomenon of relief by flush in multiple sclerosis; its use as a foundation for therapy." AMA Arch Neurol Psychiatry. 1955 Feb;73(2):232-40. DOI:10.1001/archneurpsyc.1955.02330080110020

Denoon, DJ. "Vitamin B3 May Help MS." 2006. WebMD Health News. See:

Nasr, C. "Flushing." (n.d.) Cleveland Clinic Center for Continued Education. See:

Ganesh & Stahnisch. "On the Historical Succession of Vessel-Based Therapies in the Treatment of Multiple Sclerosis." 2013. Eur Neuro 2013;70:48–58. DOI:10.1159/000348780

Rhodes, MA; Haacke EM, Moore EA. CCSVI as the Cause of Multiple Sclerosis: The Science Behind the Controversial Theory. McFarland Health Topics: 2011. ISBN-13: 978-0786460380. Amazon link

Stimson, D. "Vitamin B3 Points Toward New Strategy for Treating MS" 2007. National Institute of Neurological Disorders and Stroke. See:

Thursday, January 2, 2014


Dear Multiple Sclerosis, 

I resolve to return here on December 31, 2014 and say, "What? That's all you got?" and make a duck face. Y'all remind me and I'll Instagram the moment. #findacureforMS