Invisible MS Symptoms Mask Disabiltiy

MS is such an invisible disease. Very few of the symptoms can be seen or detected by others, and only if they are really paying attention, they may notice tremors, inability to walk, balance impairment, speech problems, or bladder/bowel issues. Many MS symptoms cannot be seen, such as pain, spasticity, numbness, itchiness, fatigue, vision problems, dizziness, cognitive problems, or emotional changes.

Most of the time I do not look disabled. I am blessed to be able to move around easily, only getting noticeably fatigued with severe heat or exertion. Symptoms such as spasticity or pain respond to medication, exercise, and rest. Very rarely have I lost bladder control in public and even then I was able to go home to get cleaned up and change clothes.

To look at me, you can’t tell that sensation is diminished in my feet and ankles. My proprioception is affected and I dare not stand with my feet together and close my eyes for risk of losing my balance and falling. I am careful how I place my feet on the ground to avoid the ‘kissing the sidewalk’ symptom which I’ve experienced on a number of occasions. Those face plants are no fun and can cause extreme embarrassment and pain.

When invisible symptoms are hard for others to see...or hear.

Last weekend one of my invisible symptoms - impaired balance - caused a public disruption. I was in the airport in Newark, New Jersey, when TSA agents at the security checkpoint repeatedly asked me to stand in the body scanner machine. I’m not sure what went wrong the very first time I stood there. But in repeated attempts in the machine, the agents complained that either my feet were not far enough apart, or my hands weren’t high enough, or I wobbled which made the image blurry.

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Invisible MS Symptoms Can Cause Frustration and Mask Disability

MS Patient Develops Guided Imagery Program

Treatments for MS that fall outside of conventional medicine are often considered complementary or alternative therapies. Guided imagery is an integrative mind-body therapy that has demonstrated the ability to reduce pain, stress, anxiety, and depression in patients dealing with a variety of disorders. While patients look to integrative medicine to help improve their lives, it is important that research is conducted to demonstrate the benefit of specific interventions, especially those used within the MS communities.

Paula Marie Jackson, diagnosed with MS in 1999, is a certified hypnotherapist who has developed a novel guided imagery protocol for MS patients she calls Healing Light Guided Imagery (HLGI). Ms. Jackson collaborated with researchers from the MS Center at University of California San Diego (UCSD) and the Center of Excellence for Research in Training in Integrative Health to conduct a small self-funded pilot study comparing the effects of HLGI and those of journaling on quality of life, fatigue, and depressed mood in 11 MS patients.

What is Healing Light Guided Imagery (HLGI) and how does it differ from other forms of guided imagery, meditation, or hypnosis?

PMJ: Healing Light Guided Imagery (HLGI) is a hybrid therapy combining meditation, mindfulness, and light hypnosis that I began to develop during my own MS diagnosis. As I trained, practiced, and worked to improve this hybrid technique, I found an optimal framework that worked wonders with most of my symptoms and was effective in helping others living with MS. The researchers at UCSD have been referring to it as an Integrated Mindfulness technique that is a simpler version of mindfulness which is easier to learn in a relatively shorter period of time.

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MS Patient Designs Novel Guided Imagery Program

Guided Imagery Reduces Depression and Fatigue in MS

Complementary and Alternative Medicine (CAM) therapies include a wide variety of interventions — from diets and supplements to meditation and tai chi — aimed at improving health and well-being. CAM therapies may be used alongside (to complement) or instead of (as alternative to) conventional therapies. Many patients with multiple sclerosis may incorporate CAM therapies into their self-care without realizing it. If you meditate, do yoga, or take certain vitamins or supplements to reduce MS symptoms or improve quality of life, you are using CAM.

In 2014, the American Academy of Neurology (AAN) released guidelines for the use of CAM in MS, classifying therapies into three groups: mind-body medicine, biologically-based practices, or manipulative and body-based practices. The National Center for Complementary and Alternative Medicine (NCCAM) defines mind-body therapies as those that integrate the brain, mind, body, and behavior, with the intent to use the mind to affect physical functioning and promote health; examples include meditation, yoga, tai chi, relaxation techniques, biofeedback, and hypnosis.

Guided Imagery (GI) is a traditional mind-body technique that is considered a form of hypnosis. The term ‘guided imagery’ can be found scattered throughout the literature examining the use of CAM therapies in MS. However, a systematic review of mind-body medicine used in MS identified only a single study (Maguire, 1996) that examined the use of GI in MS producing mixed or inconclusive results.

A recent small pilot study conducted at the University of California San Diego (UCSD) examined the effect of a novel guided imagery modality developed by a person living with MS as compared to guided journaling. This study measured the quality of life, fatigue, and depressed mood in 11 patients with MS over the course of 10 weeks. Participants were randomized to weekly 1-hour guided imagery sessions (n=6) or an at-home journaling program focusing on topics of gratitude or positive self-image (n=5).

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Guided Imagery May Reduce Depression and Fatigue in MS

Positive Trial Results for Ocrelizumab in Primary Progressive MS

After lots of hype and buildup ahead of the conference, the pharmaceutical company Roche-Genentech finally revealed a bit more than simply “positive results” from three pivotal Phase III studies of the experimental MS therapy ocrelizumab in relapsing MS and primary progressive MS (PPMS). While relapsing MS has 13 approved therapies and other treatments which are used off-label, such as rituximab, effective treatment for PPMS has continued to be elusive.

What is ocrelizumab?

Ocrelizumab is a humanized (10 percent mouse, 90 percent human-derived) monoclonal antibody designed to target a selective group of immune cells - CD20+ B-cells - which have been implicated in the damage of myelin, the fatty substance that protects nerve cells and helps to speed the transmission of nerve signals throughout the body. In clinical trials, ocrelizumab 600 mg was administered by intravenous (IV) infusion every six months, given as two 300 mg infusions spaced two weeks apart in the ORATORIO trial, while repeat rounds in the OPERA I and II trials were given as a single 600 mg dose infusion.

Ocrelizumab works in the same way as rituximab (Rituxan), a chimeric (100 percent mouse-derived) monoclonal antibody that attaches to CD20 cell surface proteins and causes certain B-cells (but not stem cells or plasma cells) to self-destruct. Rituxan is used to treat rheumatoid arthritis (RA), non-Hodgkin’s lymphoma (NHL), chronic lymphocytic leukemia (CLL), granulomatosis with polyangitis (GPA) and microscopic polyangitis (MPA). Rituxan is also used off-label for a number of other autoimmune diseases including MS and neuromyelitis optica (NMO). Patents protecting Rituxan (jointly marketed by Genentech and Biogen) from generic competition begin to expire in 2015.

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Is Ocrelizumab The Next Game-Changer in MS Treatments?

Do You Celebrate Your MS-Anniversary?

So I woke up this morning, trying to remember the date. Then I had this itchy little question in the back of my mind, “What’s supposed to happen today?” After which I remembered…

Today is my MS-iversary!!

It was ten years ago on this date that my neurologist simply informed me that, “Now, we can prescribe one of the disease-modifying drugs.” He didn’t say, “You have MS.” He just told me that my follow-up MRI showed more lesions so I qualified to start treatment. Plain and simple. No big fanfare. I was just ready to get moving on things and to start beating back this beast that was taking away my ability to perform.

That appointment in October was somewhat anticlimactic, however. The month earlier I had attended my neurology clinic’s annual MS seminar at which I was introduced to the specialized MS nurse from the clinic (whom I had yet to meet in the office). She asked me, “Do you have MS?” and my response was, “I don’t know yet.” She replied with a kind hand on the shoulder that I would not have received the mailing for the seminar if it wasn’t very likely I have MS.

MS was not a surprise by the time I received the diagnosis. It was just a turning point that opened up new options for what we could do.

So when I think of the anniversary of my MS diagnosis, I almost laugh. Which event exactly do I want to celebrate? How do I want to put MS into perspective within my life’s journey?

If I look back 10 years to the actual diagnosis date and calculate based on adult years, I’ve lived with MS for just over 34% of my adult life, or not quite 20% of my entire life.

If I look back at the case of blinding optic neuritis, I’ve lived with MS symptoms for 32% of my entire life, or 52% of my adult life.

Or if I go back even further – to the time in graduate school when I was having visual disturbances and the opthalmologist at the university clinic ordered MRIs of my brain/optic nerves – I have lived with a suspected neurological condition for 86% of my adult life.

So how long have I had MS? The official answer would be 10 years.

My apologies to my MS for almost forgetting our anniversary. We’ve been on this road together for so long, and have become so comfortable with each other and our many idiosyncrasies, that I almost forgot.


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How Dare I Forget My MS-iversary?

Short Tempers and MS

“Sorry, I’m not really angry with you, but please just stop whatever it is that you’re doing that is driving me CRAZY,” says the MS patient who has lost all his/her patience.

Do you ever feel like that? I do, too often (said with a sheepish downward glance).

I never used to be short on patience for myself or for others, but in recent years, I notice that my fuse has gotten terribly short. I can become ill-tempered at the swift turn of a moment.

Anecdotally, a small number of fellow MS patients have expressed experiencing something similar. At times it seems like anger arises very quickly, or that there are fewer filters through which anger is dispersed.

I was curious to see if there were official connections between MS, short tempers, anger, and extreme mood swings documented in the literature. Various MS societies worldwide offer pages of information related to MS and mood disorders including depression, anxiety, emotional lability, and pseudobulbar affect. But these explanations do not seem to fit what I feel every once in a while.

Part of the time, I feel overwhelmed which contributes to my internal flame. For example, I went shopping recently with my mother for new pants. The saleswoman was very attentive, almost TOO attentive, and wanted to make sure that we had what we needed.

Although I imagine that none of us like to feel like we’ve been abandoned in a dressing room, I now wonder if it’s possible to get too much attention.

Tap, tap, tap…..”how’s the ‘jean no.2’ working out for you?” I hadn’t even taken off jeans no.1 yet and was helping my mother with her own selections. “Do you want me to bring you anything else?” I was also fielding questions from my mother asking what I thought of different options and I was quickly beginning to feel overwhelmed.

Eventually I took a big, deep breath and ask my mom to SLOW it DOWN with the questions. Next thing I know she’s moved into recreating a scene from the old TV show “TAXI” where during the written portion of a driving exam, Jim asks, “what does a yellow light mean?” and his co-worker Bobby whispers, “slow down.” Jim’s response is to ask again, “what….does…a….yellow…light….mean?” in an exchange that repeats itself a few times growing ever more ridiculous.

Aargh, funny enough, but not helpful when I’m trying really hard not to snap at persons who don’t deserve it and are just trying to help me the best way they know how.


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Just Stop It! Short Fuses and MS

Three Things My Doctor Got Right

When I was first diagnosed with MS, there was so much I didn’t know about the disease or about my own body. I thought that I knew, but in looking back I had very little idea.

And to confuse matters, it seemed like I was always one doctor’s visit ahead of my neurologist when it came to recognizing what I needed, such as occupational/physical therapy to rebuild strength in my left hand, a disabled parking placard to avoid becoming a walking hazard, and medication to combat spasticity.

Here was our routine: I would notice a subtle symptom or growing problem and mention it during an office visit. He would examine what could be detected and determine that it was not something to be concerned about. Something would happen between visits related to the original concern and I would dutifully report it. He would then prescribe or recommend whatever service or intervention it was that I originally thought I needed.

At the time, these delays were annoying, but it was a bit entertaining to feel as though I was always one step ahead of my doctor. In retrospect, I feel disappointed that perhaps my neurologist was not as responsive to my concerns as he should have been - a disappointing story which is shared repeatedly among patients in the MS community.

However, there are several things which my doctor got right in his advice and recommendations that I didn't fully appreciate at the time. Here are three of those pieces of wisdom.

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3 Things My Doctor Got Right