Tuesday, April 29, 2014

April 2014 Round-up of MS News and Research

Highlights of the evidence-based recommendations for complementary and alternative medicine (CAM) in MS issued by American Academy of Neurology (AAN) include possible effectiveness of different forms of cannabis extracts or synthetic cannabinoids for spasticity symptoms, pain, and urinary frequency; magnetic therapy and ginkgo biloba for fatigue; and reflexology for paresthesia.  Cannabinoids are likely ineffective for short-term spasticity, tremor, and urinary incontinence.  Magnetic therapy is probably ineffective for depression and ginko biloba is ineffective for cognition. Fish oil and bee sting therapies are probably ineffective for relapses, disability, fatigue, MRI lesions, and health-related quality of life (QOL).

A recent study shows that, for many individuals with MS, fatigue is associated with poor sleep quality.  Fatigue is among the most common symptoms of MS, affecting up to 80% of those diagnosed with the disease.  Several factors may contribute to the connection between poor sleep quality and fatigue.  Increased levels of inflammatory cytokines or lesions in the brain may disrupt pathways involved with sleep and daytime alertness.  Sleep apnea, which is common in people with MS, may also result in both fatigue and sleep disruption.  The use of MS disease modifying therapies, particularly beta interferons, may contribute to both fatigue and sleep disturbance. Although depression was associated with both sleep disturbance and fatigue in this study, authors note that exclusion of patients with severe depression and the low incidence of depression in the study participants limits their ability to evaluate a possible connection.

Neuromuscular electrical stimulation cycling benefits people with advanced MS according to a recent study.  Eight women with secondary progressive MS (SPMS) participated in a training program utilizing neuromuscular electrical stimulation (nMES) cycling that resulted in several real and perceived benefits.  Electrodes are placed on the quadriceps, hamstrings, and gluteal muscles of each leg which allows persons with paralyzed legs to exercise on a stationary recumbent bicycle.  The goal of this study was to investigate the feasibility of adapting nMES cycling to suit the needs of persons with MS. Adaptations included a slower pedaling cadence (at a speed of 10 revolutions/minute) which produces greater muscle forces and a slow, gradual increase in stimulation intensity (pulse amplitude) during the first 20 minutes of each exercise session as patients adjusted to the uncomfortable stimulation.  Study outcomes included the stimulation intensity tolerated, thigh circumference changes, and power output and cardiorespiratory response during cycling. 

Read this post in its entirety:
Hot Topics and MS Research News for April 2014

Thursday, April 24, 2014

Stay Cool This Summer

Summer is my husband’s favorite season. He absolutely loves the heat.  I personally enjoy springtime when the air is crisp and the plants are blooming. 

Keeping cool is the key to enjoying those lazy, hazy, crazy days of summer.
Cover up:
  • Wear lightweight, loose-fitting clothes that cover more of your body, and protect your skin from the sun’s rays, to help keep cool in low humidity heat.
  • Choose loosely-woven natural fabrics (cotton, silk, linen), rather than polyester, rayon, or other artificial fibers which don’t “breathe”.
  • Wear light colored clothing to help reflect heat.  Darker colors absorb the sun’s heat and stay warmer longer.
  • Articles of clothing designed to wick moisture from the body and dry quickly may be helpful in high humidity environments.
  • Sit in the shade and avoid strenuous activity during peak sunlight hours (10 am - 3 pm).
Add water:
  • Stay hydrated by drinking plenty of water and avoiding caffeine.  A hydrated body is better able to regulate temperature.  Try drinking at least 8 ounces of water every hour to stay hydrated in the heat.
  • Run cold water over your wrists for 10 seconds on each hand to help cool down.
  • Fill an inexpensive spray bottle with water and use it to mist yourself.  In a breeze, water on the skin evaporates and helps to cool the body in a similar manner to perspiration.
  • Wrap a wet handkerchief, towel, or cloth around the back of the neck.
  • Take a cool bath or jump in the pool and go swimming.
Keep it frozen:
  • Drink iced beverages.  Frozen beverages, such as “slurpees”, or popsicles can help provide temporary relief.
  • Freeze bottles of water and sip on the water as it melts throughout the day.
  • Hold ice cubes, ice packs, or anything frozen against the inside of the wrists, back of the neck, or top of the head to provide quick relief.  
  • Snack on frozen bite-sized pieces of fruit, such as pineapple chunks, banana slices, blueberries, or grapes.
 Read this post in its entirety:

Strategies for Keeping Cool with MS in the Summer Heat

Thursday, April 17, 2014

Is Medical Marijuana Effective Against RA Pain?

The use of medical marijuana remains a hot topic in the United States.  Although twenty states and the District of Columbia have enacted laws to legalize medical marijuana, in the majority of the country marijuana is still an illicit drug.  Two states, Colorado and Washington, legalized the recreational use of marijuana in 2012.  Despite state laws allowing for medical or recreational use of cannabis, the US federal government continues to list marijuana (cannabis) as a Schedule I substance under the Controlled Substance Act which makes it illegal to possess, use, or sell marijuana throughout the United States.

The Arthritis Foundation, an advocacy organization representing patients with all types of arthritis, featured a discussion on issues related to medical marijuana in its May/June 2013 issue of Arthritis Today. See “Medical Marijuana: RX or Risk?” (pdf) by Camille Noe Pagán.
- See more at: http://www.healthcentral.com/rheumatoid-arthritis/c/72218/168517/marijuana-pain#sthash.WqcLgwoe.dpuf
The use of medical marijuana remains a hot topic in the United States.  Although twenty states and the District of Columbia have enacted laws to legalize medical marijuana, in the majority of the country marijuana is still an illicit drug.  Two states, Colorado and Washington, legalized the recreational use of marijuana in 2012.  Despite state laws allowing for medical or recreational use of cannabis, the US federal government continues to list marijuana (cannabis) as a Schedule I substance under the Controlled Substance Act which makes it illegal to possess, use, or sell marijuana throughout the United States.

The Arthritis Foundation, an advocacy organization representing patients with all types of arthritis, featured a discussion on issues related to medical marijuana in its May/June 2013 issue of Arthritis Today. See “Medical Marijuana: RX or Risk?” (pdf) by Camille Noe Pagán.
RA Pain, Disease Activity, and Cannabis

In a phase II double-blind, randomized, placebo-controlled, 5-week study of 58 rheumatoid arthritis patients, researchers assessed the efficacy of Sativex administered at night up to a maximum of 6 sprays per evening (16.2 mg THC + 15 mg CBD) in 31 patients compared with placebo in 27 patients.  The primary outcome measure was morning pain on movement. Secondary outcomes included measures of pain at rest, sleep quality, morning stiffness, the Short-Form McGill Pain Questionnaire (SF-MPQ) and the 28-joint disease activity score (DAS28).  Baseline scores (an average of the last 4 days of a 14-day baseline period) were compared with the average of the last 14 days of treatment (Blake 2006).

Sativex produced statistically significant improvements in morning pain on movement, morning pain at rest, quality of sleep, disease activity (measured by DAS-28), and SF-MPQ pain at present, as compared to placebo.  However, researchers found that Sativex had no effect on morning stiffness in this group of RA patients (Blake 2006). Authors did point out that baseline scores for morning stiffness had been low initially.  No serious adverse effects occurred in the active treatment group and the large majority of adverse effects were mild or moderate, including dizziness, light-headedness, dry mouth, and nausea.  More studies are warranted.
Read this post in its entirety:

Can Medical Marijuana Help Reduce RA Pain?

Monday, April 14, 2014

Guest Post: Having a Talk with Your Doctor about New Treatment Options

Enjoy a guest post from my friend Jennifer Digmann:

It was Friday, March 21, and this whole Multiple Sclerosis thing started to get real.

Real and sort of scary.

Don’t get me wrong, I’ve been living with MS for nearly 17 years and have tried four different disease-modifying drugs (Avonex, Betaseron, Copxone and Novantrone). I have spent hours upon hours at physical therapy working to regain lost function.

Wow, you’d think I might have realized the disease meant business 12 years ago when it stole my ability to walk, but no, I didn’t realize it until two weeks ago when my neurologist asked how I was doing.

I thought for a moment and answered her honestly, “I’m a little more tired and weak than I’d like to admit. Especially with me just finishing another round of PT. My trigeminal neuralgia seems relentless. But other than that… oh and I feel sad a lot, okay yah, besides that I’m good.”

I even smiled meekly to prove it.

Dr. Braley waited a few minutes to process my words and responded, “It seems like you were talking about these same issues six months ago and they haven’t resolved any, huh?”

She went on by testing my strength. “You don’t seem to be much weaker than at our last appointment but either way, I don’t like it. And I don’t like you having constant pain.”

I don’t like it, either, and I responded to Dr. Braley:

“It is not like we haven’t tried,” I said. “I mean, I’m at my max for Novantrone infusions and this new drug combo you prescribed for my TN pain works pretty well. Besides, with Secondary Progressive MS there isn’t much out there for me.”

With me saying that, Dr. Braley quickly corrected me. “Have you heard of, or thought about, Rituximab for your MS? Then, maybe you should make an appointment with a neurosurgeon. He may have a solution for your trigeminal neuralgia pain.”

Uh, what? You’re talking about two things I haven’t necessarily considered, let alone heard of, Dr. Braley.

She gave me a good overview of each treatment and encouraged me to do some homework and think more about each of them over the next few weeks. I’m looking into them and, well, this MS thing is getting real.

In short, Rituximab, “… is a monoclonal antibody. This medicine changes the way the body's immune system works. It is used commonly to treat non-Hodgkin's lymphoma and other conditions. … It is also used to treat rheumatoid arthritis (RA).”

Other conditions… Well, Multiple Sclerosis in one such condition and I have heard great things about this medication. I am giving Rituximab a lot of thought and weighing my choices very seriously. But it got even more serious when, as I continued researching this medicine, I discovered an FDA alert about the medicine posted on the Healthline website.

Oh how I hate MS!

Now that I got that off my chest, I can focus on another real, scary thought: Neurosurgery to treat trigeminal neuralgia (TN). Neurosurgery severs the nerve. However, nonsurgical options like radiofrequency thermal lesioning or gamma-knife radiosurgery have also been used, thus several different treatments have provided relief for TN sufferers. Considering that one of these options has potential, back to the homework I go.

Yes, Multiple Sclerosis is frustrating and can be scary, but upon leaving Dr. Braley’s office, I felt optimistic. After living with the disease for such a long time, it’s nice to have some hope there are possible treatments that could alter MS’s course and rid me one of its most painful symptoms. 

Or, at least I can move forward feeling empowered that I am taking an active role in looking into ways that I can help to influence how this disease affects me.

Jennifer Digmann and her husband Dan Digmann wrote the inspiring book, Despite MS to Spite MS.

Wednesday, April 9, 2014

Life with RRMS: Stubbornness or Denial? When MS Makes a Minor Appearance

Ok, I admit to a certain level of stubbornness. Last week, I had that nasty episode of spasticity which resolved (see my post "MS Needs to Check My Calendar First" on MultipleSclerosis.net).  During the past 2 weeks or so, I've had on/off bladder issues.  (grumble, grumble). 

So this past Monday, I dug through my meds to locate the "emergency" supply of decadron I've had since 2011 and started up a steroid taper. Yesterday, no bladder issues.  Today, no bladder issues.  Whoohoo.  This is nice.

Oh, wait.  That means this really does count as a minor relapse, I suppose.  (boo). 

No surprise, really, as I've been pushing myself so hard for the past couple of months; it was bound to catch up with me.  And right before I'm heading out of town/on the road 4 days out of 6 next week.  Oh well, I guess I'll just have a nicely rounded steroid face when meeting several people for the first time.  Maybe I can avoid the dark circles under the eyes this time though.

Here's fingers crossed that nothing bigger arises on the MS front until I am able to schedule my next round of Rituxan (hopefully in May, probably in June).

Tuesday, April 8, 2014

Short term memory problem? Or, just a wandering mind?

This morning in the middle of my shower I was standing under the shower head with water flowing through my hair.  I checked the back of my ears to see if they were clean.  Once I was satisfied, I reached for my shampoo bottle.

Wait.  Had I already washed my air?  I seem to recall squeezing shampoo into the palm of my hand.  So I checked my hair.  The hair itself felt smooth and even, not obviously dirty, but not squeaky either.  (Not that I aim for "squeaky" hair, just clean hair.)

So I continued to squeeze shampoo into my hand and proceed to wash my hair.  If I've already done it once, a second time won't hurt.  If this is the first time, then I'm glad I didn't skip it and come out of the shower with wet, but dirty, hair.

Everything goes as normal while now my mind is not on all the details of things going on my life, I'm just thinking about getting my hair clean.  It was when I was finishing up the rinsing process, that I realize I really had not washed the first time.

Do you want to know how I knew "for sure"?

Every time I wash my hair, I end up with several strands of hair stuck to my hands, back and palm.  I typically roll these strands into a ball and discard them.  (Often, discarding entails flinging the ball of hair onto the wall of the shower or on the bottom rung of the shower shelves which is our "toe hold" for shaving legs.)

There was no ball of hair present, so I contributed the contents of my palm.  Proof I had washed was deposited in the shower.

Then, I used a little bit of conditioner which always helps the other loose hair to be released from the big mop of hair which I continue to grow on a regular basis.  A second ball of hair is deposited in the shower, this time much larger than the first.

One would think with all of the hair that ends up on the shower walls and in my combs and brushes that I experience significant hair thinning.  So far, that hasn't become evident, but I'm sure that it will something.

In the meantime, when I question whether or not I really had washed my hair as I was daydreaming under the water, I can turn around look for the deciding proof.  No balls of hair means Lisa hasn't shampooed yet.  Simple solution.

So was it a temporary memory problem, a wandering mind, or just another instance of going through life and not being in the present moment?

What do you think?  How do you know if you've already done something or not when you're in middle of doing it?

Thursday, April 3, 2014

Carnival of MS Bloggers #154

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Valéria at It's complicated.

What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.

I’m hungry.

I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.

Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me. And so I sleep.

I cry.

I remember crying because I was so fucking hungry but unable to get up and feed myself. I remember lying flat, limbs extended. Limp as a puppy, sobbing.

Sometimes I could make it to the fridge. I remember eating bread. Rolls. Holding onto the walls for support. Using my apartment as a walker.

I remember that when the disease hit it was nuclear. It obliterated me. I remember dreaming about 9/11 because my body identified with the collapse of those twin towers.

Whenever I was trying to do something difficult that required an extensive amount of concentration—like traverse an apartment, open a fridge, or take a piss—I would listen to my own breathing. To the silence.

I remember a stillness, a quietness that I’d almost never felt before and have almost never felt since (except on really bad days when, in class, I find myself again seeking out a wall to strategically hold onto in order to create the illusion that I’m not about to collapse–all of course while continuing to seamlessly deliver the day’s lecture on the present subjunctive, or vocabulary pertaining to zoo animals).

Crossing a street can be a victory. Taking a piss can be victory. I count my breaths. I listen.

I remember that for the longest time no human being touched me for any reason other than medical intervention. Nurses grasped my arms to insert needles or tie tourniquets. Doctors placed a firm hand on my back as I failed and failed and failed my Romberg’s test. Imaging techs gently guided my head into place for my 2 to 3 hour long MRI scans. The only touch I experienced was being strapped, tied, punctured, swabbed, infused, and physically manipulated. The worst is when they deliberately induce muscle spasms. I always beg for them not to deliberately induce muscle spasms. Please, please don’t do that thing. You know—that thing.

I remember having to do pulse steroids every single month for almost a year—along with thrice-weekly injections of Rebif—just to achieve something remotely like “remission.” The drugs demolished my immune system, leaving me with the blood cell counts of someone HIV+.

I remember being too weak to stand up after steroid infusions. Listen, I get 1,000mg of Solumedrol in 500ml of saline, — an assertion on my part which would inevitably cause the nurses to protest because “That’s more saline than normal. Why do you get so much saline?”

If you don’t give me 500ml of saline and infuse slowly over the course of 2 hours I will throw up.

“We usually infuse this in 30-40 minutes.”

Fine, then I’ll throw up.

“Fine. We’ll do it your way then.”


They did it my way.

I remember leaving Brigham and Women’s at rush hour on a weekday and the #66 bus being jam-packed and me with a bandaged arm, glassy eyes, and an inability to stand and nobody—nobody—would offer me a seat. I remember sitting on the floor of the bus because I could not stand. I became stubborn in my willingness to sit down on floors, on the ground. Whenever I was out in public and became too fatigued to stand, I would simply sit down—wherever I was. Right there. Sit.

No, I don’t care who is looking. No, I don’t care what you think. I am sitting. Right now, right here, what I am doing is sitting, and I will get up when I am good and ready, and if you want to leave me here then go, fuck you, I don’t care.

I just need a minute. I just need an hour. A day. A few days. Just a week. A month. A couple of years, actually. Be right back.

Just need to get my bearings.

Just need this wall here. This is a good, solid wall. I love this wall. It’s not going anywhere, and I can lean on it. Holy shit: this wall is amazing. This wall is here for me. I love you, wall. Wall, I love you.

Whenever I would receive steroid infusions the only thing I could eat for days was Vietnamese food from Lês in Harvard Square. Pho chay, specifically.

I need limes from the grocery store. I need Vietnamese food and I need limes. I need, like, 40 limes. I need to get them before the steroid crash that’s coming in a few hours. Before it’s too late. I have to go, now, to the grocery store and buy like $40 worth of limes. Right now. Don’t bother me. I am on a mission. Don’t text me anymore because I need limes, OK? Goodbye. I need limes.

Steroids have a half-life of around 18-26 hours. If you’ve been infused with high doses for days in a row, your adrenal glands stop producing cortisol. Houston, this is a problem. I remember the crashes—the sweats, the muscle weakness, the inability to stand up (more so than usual), the bone pain.

This is why I need Vietnamese food and I need limes, and I need them now, before it’s too late.

I remember that I was left for dead for 2 years. Left for dead by everyone who was supposed to be there. Left for dead like an injured racehorse ready to be shot. I remember seriously weighing the hypothesis that perhaps I had already died and this was why I was being kept separate from the living. Why it seemed that no one could see me anymore. Why my ontological status seemed to have changed. I lay flat. Breathed. Waited. And sometimes, yes, I cried.

by Stacie at Keep Doing What You're Doing

I’m doing the best I can. I may not be doing EVERYTHING I can, but it’s still enough.

I’ve been experiencing some additional MS symptoms lately. It’s completely understandable given I’m experiencing more stress than usual. Still, when healthy habits lead to feeling better it’s easy to blame myself for not living a perfect, healthy life when symptoms emerge.

When I was diagnosed with MS, I felt like my body had betrayed me and I could no longer trust it. I thought I was super healthy, and suddenly my body went numb. Doctors told me I had an incurable disease that I’d had for years.

In my research of how others coped with MS, I often heard people approach it as warriors fighting a daily battle against their disease. I can appreciate the analogy and it makes sense, but it never resonated with me. Fighting myself feels exhausting. And what am I fighting? I have a super active immune system that thinks the insulation on my nerves (myelin) is an invader and needs to be destroyed. My immune system is fantastic at destroying other invaders. It’s just confused with myelin some of the time. Bummer.

It occurred to me to think of my body as my buddy who is great at some things and sucks at others but I love her just the same. My body didn’t betray me. She is doing the best she can. She held up magnificently for a long time, and she continues to do amazing things. My neurologist says with my MRI scans he would expect me to have some disability. At this point I have symptoms I notice but no one else does. I think it’s awesome that my body has compensated to get the nerve messages to parts of my body blocked by lesions.

It’s taken me time to shift my thinking from feeling betrayed to trusting myself again. Now I think being healthy and having an incurable disease are not completely opposite ends of the spectrum. They can both be true in one body.

My body has been doing the best it can all my life. Some of my habits help it, and some challenge it. Some activities and foods don’t support optimal physical health, but they nurture my mental health and feed my soul. Sometimes I’m coping and sometimes I’m nurturing. I think stressing out about not doing more can be more harmful to my health than the occasional indulgence.

So I may not be doing everything I can, but I’m balancing all aspects of my health in order to lead a fulfilling, active and hopefully long life!

This concludes the 154th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 1, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 29, 2014.