MS Pain: What is the MS Hug?

Pain is not a symptom of multiple sclerosis, right? Wrong. That has got to be one of the more frustrating myths for those of us living with MS. Pain in MS can show up as neuropathic pain or musculoskeletal pain. A particularly disturbing type of pain in MS that can sometimes feel like a boa constrictor is squeezing the breath out of you has commonly been called the MS hug.

Neuropathic pain

Symptoms of MS stem from damaged myelin (the coating that protects nerves) that impacts proper nerve function and health. Neuropathic pain can be caused by disrupted nerve signals. Symptoms of neuropathic pain may include abnormal sensations — tingling, numbness, skin crawling, itching, burning, or prickly sensations — which are called paresthesias. These can be acute or chronic, severe or mild, painful or just plain weird.

Musculoskeletal pain

In MS, disrupted nerve signals and overly sensitive motor neurons can lead to spasticity and/or painful muscle spams. Musculoskeletal pain caused by muscle spams, muscle weakness, physical stress on joints, or poor coordination are commonly associated with MS. These pains may be acute or chronic. When they show up suddenly, last only a brief period of time, and disappear rapidly, they are called paroxysmal symptoms. Paroxysmal symptoms may occur once or repeat over a longer period of time. If they show up repeatedly, that might be a sign of an MS relapse.

Treatment for MS pain

Common pharmacological management of neuropathic pain in MS includes anti-seizure drugs, corticosteroids, anti-spasticity drugs, or benzodiazepines. Antidepressant agents and opioids may help to modulate the experience of pain. Musculoskeletal pain may respond to physical therapy, stretching, spasticity medications, and conventional painkillers such as ibuprofen.

The MS hug: Definition and causes

The MS hug is a highly unpleasant, painful banding sensation that occurs anywhere around the torso. Some people in the online community have referred to the MS hug as the “Squeeze o’ Death.” Symptoms of the MS hug can show up anywhere on the torso, on one side or the other, or circling all the way around the body. The pain can range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may even differ from one episode to the next.

Explanations of the cause of the MS hug vary. The pain may be neuropathic in origin such as dysesthesia (which is basically a really bad paresthesia). The pain might stem from extreme spasticity in the intercostal muscles of the rib cage. There are three layers of muscle fibers in the intercostal muscles that connect the ribs and assist with breathing. If these muscles are involved, symptoms may include chest tightening, difficulty breathing, and limited mobility.

What to do if you have the MS hug

If you suddenly experience chest pain or asthma-like symptoms, or you feel like a big snake is trying to squeeze the life out of you, don’t assume that it is your MS. Seek medical attention immediately. There may be another cause of your symptoms or pain. It’s better to err on the side of caution when your health is concerned......

Read this post in its entirety:

What is the MS Hug?

What Causes the MS Hug?

One particularly mysterious occurrence of MS pain, nicknamed the “MS Hug,” is often described as a banding sensation or girdle pain surrounding the torso.  While articles of clothing such as girdles, corsets, or Spanx have been used to shape a woman’s torso for years, the MS Hug tends to cloak an individual in pain.  Some people in the online community have referred to the MS Hug as the “Squeeze o’ Death.”

Available explanations of the cause of the MS hug vary.  The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia).  Symptoms of the MS Hug can show up anywhere on the torso, on one side or the other, or circling all the way around.  Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure.  Each person’s experience is unique and may differ from one episode to the next.

One particularly mysterious occurrence of MS pain, nicknamed the “MS Hug,” is often described as a banding sensation or girdle pain surrounding the torso.  While articles of clothing such as girdles, corsets, or Spanx have been used to shape a woman’s torso for years, the MS Hug tends to cloak an individual in pain.  Some people in the online community have referred to the MS Hug as the “Squeeze o’ Death.”

Available explanations of the cause of the MS hug vary.  The highly unpleasant banding sensation occurring anywhere around the torso area could simply be neuropathic pain or dysesthesia (a really “bad” paresthesia).  Symptoms of the MS Hug can show up anywhere on the torso, on one side or the other, or circling all the way around.  Pain from the MS hug may range from mild numbness or tingling to excruciatingly sharp pain or pressure.  Each person’s experience is unique and may differ from one episode to the next.

Common pharmacological management of neuropathic pain in MS includes anti-seizure drugs (e.g. Neurontin, Lyrica, Tegretol), corticosteroids and topical agents (e.g. capsaicin, lidocaine, menthol cream), anti-spasticity drugs (e.g. baclofen, Zanaflex), or benzodiazepines (e.g. Valium).  Antidepressant agents (e.g. Elavil, Cymbalta) and opioids may help to modulate the experience of pain.

Read this post in its entirety:

What is the MS Hug?: A HealthCentral Explainer

Carnival of MS Bloggers #124

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

MS Hug, Montel Williams, and Massage

MS Hug

by Estizer of MS Open Mic

 I read a blurb in the NMSS Magazine that stated African Americans with MS are less likely to use any of the disease modifying drugs than people of other races. That got my attention although I do think its a matter of personal choice,I choose to do drugs! I set out to find the nearest African American support group to check this out. That was 1.5 hours away in Philadelphia.  Like any other group I’ve come upon, I talked more than anyone in the room. Except this one guy, he was pretty cool. I brought up the article and as it stated most of the people in the room were not on medication. But what the article failed to address was how many people in the room had insurance or co-pay issues.  As I looked around the table I was far more concerned with the level of obesity and a host of other health issues that must only complicate MS.

Everyone went around the table and talked about what bothered them last month and then it was the cool guys turn)At first he had a burning pain in his leg JUST LIKE MONTEL but when Montel said it I thought it was totally BOGUS DUDE and he just wanted to smoke some weed, but now I believed him! (Sorry Montel) Next the cool guy said he had an MS Hug and EVERYBODY in the room was like “oh yeah, oh yeah…they’re the worse right? Hahaha, oh yeah” EVERYBODY except ME! All of the sudden I felt like I forgot to put my drawers on. I just sat really quiet so nobody noticed.

Now… how cool was I when two years later I felt an intense tightening around my chest, along with a pain and burning sensation. I clutched my chest… awashed in fear! This was it! Did I go to the emergency room? Because these were all the signs of a heart attack. I DID NOT. Why you ask? Because this was an MS HUG like the cool guy at the support group had described…just like it…right…everybody said so, right?

Montel Williams Interview on Larry King

by Eddie at Multiple Stupidness

Montel Tells

When I first became ill, I scoured the internet for information on MS. Of course, this included YouTube, and there are probably hundreds of videos there concerning MS. Some are informational, some are testimonials and some are interviews or excerpts from programmes. Some are depressing and misleading, some are interesting and informative, and some are absolutely inspirational.

One of my favourites is the interview on Larry King Live of Montel Williams. I hadn't heard of him before I saw the interview, but he is an American talk show host who himself has been diagnosed with MS. As I watched it, it was wonderful not only because here was a man describing very, very similar symptoms to my own, but he was able to express things about MS that I felt, but had never been able to adequately verbalise.

An example of this is the injection I take every other day. I hate taking my injection. I hate it! Why? It doesn't hurt particularly. It's take less than five minutes, and I don't really suffer side effects from the betaferon like I did in the beginning. So why do I hate taking it? Montel Williams explains it beautifully, and very quickly I started directing people to these videos if they really wanted a clear, articulate expression of what MS is like and, because my illness felt so similar to his, a little of what my experience is like.

[Please go to Eddie's blog to view the videos.]

Massage Benefits MS

by Caroline of the Girl with MS

Many folks have asked about the benefits of massage for folks with MS.

Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?

Massage!

Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.

Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.

The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.

One thing we can do to remove toxins is to have a massage. And what a treat it is!

Massage seems to help in several areas: spasticity, pain, fatigue, poor circulation, and mental wellness...ahhhh....

The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.

"Massage and the underlying disease of MS:

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:

• relief of anxiety and depression 
• improvement in mood, self-esteem and body image 
• increased ambulation and improved physical and social functioning. 

The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation." 

So, keep up the massage and add some strength training or yoga to keep those muscles strong!

Lance Armstrong's LIVESTRONG.com talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.

Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage.

"For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." 

They get it. They get the disease and seem to understand what we need to feel better.

Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:

"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. “If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect.” By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. “One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement."

Wow! This is some great stuff. A must read for all with multiple sclerosis.

The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:

• Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly. 
• Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries. 
• Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.
• Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet. 
• Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain. 
• Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension. 
• Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain. 

One of my favorites? Lymphatic massage...you can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?

This concludes the 124th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 11, 2012. 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, October 9, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #76

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

Fall Inspiration, MS Paradoxes, Bowel Management

Nature's Glorious Gifts, Like Music for the Soul

by Lisa Emrich of Brass and Ivory

Colorful leaves have been falling to the ground for weeks.  Rainfalls have drenched the ground.  The combination has left a gorgeous 'painting' upon my front sidewalk.  The gray stone is etched with images of leaves now blown away on the wind.

Nature is truly beautiful.  In fact, the universe works in glorious ways.

I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.

Read this excerpt from my Monday's post on MyRACentral:

My voice has gotten stronger over the years since disease has moved in.  I used to be a shy person who never spoke up or tried to draw attention to myself.  However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.

Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....

Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.

So Monday I mention publicly that I haven't been performing as much lately.  Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday.  Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment.  I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me.  The contractor asks me to reserve those other dates, just in case.

Thursday, I was traveling out of town to speak on a panel of health activists at a conference.  While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician.  He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra.  I even mention that they have a concert this coming Sunday.

After leaving the conference and sitting on the train coming home, I get a chance to check my email.  What do I find?  The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.

In general with all of the traveling I've been doing, I have been practicing less.  My playing 'chops' are a bit mushy and out of shape (to be honest).  I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.

However, I am needed to play.  I need to play.  I need to be able to play.  I spend some time Thursday night exercising my lungs and chest, breathing into the horn.  Coaxing a warm sound from the cold metal, vibrations traveling upon the air.  Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.

Friday (today) I go to rehearsal, music unseen awaiting me on the music stand.  I find music from composers unknown, horn parts both exposed and transparent.  Any wobbles or mishaps will be glaringly apparent.

But then rehearsal begins.  The lips cooperate, the abs stay strong and firm.  The blend of sounds created by different instruments reminds me of the falling colorful leaves outside.  I breathe in the warm air of beautiful music.  It feels good to my body.  Good for my soul.

I needed this gentle reminder from the universe that I really am a musician, an artist deep down.  Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations.  For this, I am eternally grateful. 

The Paradoxes Of MS

by Blindbeard of Blindbeard's Multiple Sclerosis Blog

Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.

1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.

2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.

Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.

Regulation, Instigation, of Constipation in My MS

by Diane of A Stellarlife

Constipation affects many people with multiple sclerosis.  I read all the "...most of the people..." symptoms as soon as I got my diagnosis and began my planning.

All my life I had been very regular.  Up in the morning, deposit in the loo, off for a run, home for my day to begin.  Even as a child, up in the morning, loo, on with day.  I took it for granted.  Never imagined anyone else had a problem.  Then I saw a photo of my uncle Arthur sitting on the john, chin in hand and written on the back was: "The Thinker."  My questions about why that was so funny led to my first understanding that for some a daily quick deposit is not so quick.

Then I read "the word" in an MS pamphlet.  Next I read how to avoid this problem, just in case it struck me.  I could understand how easily it might happen, since our ability to move becomes compromised.  When I needed my first scooter, I experienced the big C.   (Well, I DID experience Cancer at that time, but for this story that "C" is constipation.

WARNING GRAPHIC WORDS AHEAD
I no longer found the morning dump so reliable and I learned (after 40 years) that the word my mother taught me was "Grunty", NOT "Grunny."  Imagine my shock and embarrassment.  I had never needed to "grunt" before, but I certainly heard that a lot in my work place restroom.  (I kept asking friends, "Are they SICK?"  But, learned it was expected during most deposits. SHOCK)  So, then I had to take action.

First I analyzed my stools. (I warned you--this is not for the meek.), and noticed they were very dark.  Dark and hard as a rock.  I then examined my diet.  Yes, eating enough fruits, vegetables, whole grains...so I increased them all.  No change.  I swore Mr. Hankey was hard as iron.  LIGHT BULB MOMENT!  My multi-vitamin was IRON PLUS!  I thought that would be good for my MS.   Switched to non-iron.  Started reading labels of all the cereals and food I ate "iron-enriched" UGH!  I would probably explode in my next MRI!!

After a month of no extra iron, my stools returned to normal!  But, moving the bowels was still not quite right.  I remembered reading in Katherine Hepburn's autobiography that she had something called, "Psyllium," every day and she started her day with a bowel movement and dip in her lake.  I told this to my partner, who laughed and explained that was what Metamucil was.

AH!  I had seen many ads for this Metamucil stuff and although I lacked a lake, I would take it every day like my hero-actress (heroine-actor? eesch) Kate.  I began.  Not much happened. I called my doctor, "Could I take a higher dose?"  He agreed that might do the trick.

While I didn't like the consistency or color (orangish) of my poo (I WARNED YOU) I was once again going very easily.  Too easily.  It would come too fast and without warning.  What a messy situation for someone using a walker and unable to run to the loo.  I was starting to get discouraged.  Then, another light bulb---my belief was that simply drinking all the water necessary for the Metamucil dose was way more water than I'd ever drank at one time---what if I upped my water to that level and dropped the psyllium?  My fiber intake had been enough for many years...

It worked.  My bowels now move daily and are of perfect color and consistency.  I can even control what days I might want to hold off (like for doctor appts.) and up the next days water.  Such a simple fix.  I still have a nervous bowel---if I am anxious about something (like a visit from strangers) all bets are off and I can't ALWAYS make it in time to the loo, now that I must use a power chair, slow moving lift chair, transfer---but I am getting better each year at knowing when to start heading for the loo.

Yes, I discussed this with my doctors.  The nasty neuro I dumped, explained how MS effects the bowels and she showed me a poster on her wall that points out all the nerves there--wow!  Who knew?  She offered NO solutions or suggestions. My primary guy was his usual, "That is interesting."  He is still learning.   AND he is open to anything.  He KNOWS he is not God.  He also knows ME and how I experiment on myself.  My current neuro just brushed me off as usual.  She doesn't even see me anymore--has shoved me onto her rehab doc.  (I refused to be scared by her dire predictions for me and refused her drugs of choice.  She hates the sight of me.)

So...water, water, water, every other day 64oz, 32+ in between. Looking back, I really don't think this is MS related for me at all.  As a child I rarely drank and got my water from food, hense, I was over-weight.  When I got a handle on my weight, I began drinking water whenever I felt hungry.  I was not hungry, I was thirsty.  Since moving became difficult, I lowered my water intake without realizing it.  (To avoid extra trips to loo.)

When people tell me they just got DX MS, I tell them to drink more water.  Now, with the idea that iron is backing up across the blood-brain barrier, I wonder if that hurt me.

Too much IRON BAD.  WATER GOOD.  True for just about everyone!


This concludes the 76th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 2, 2010. 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, November 30, 2010.

Thank you.

Comments for this post.

Carnival of MS Bloggers #32 - Montel Edition

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

Reflection, Suffocation, and Montel

Happy 1st MS-iversary to me!
from Tingly Feeling

This post could also be titled, “How Old is This Mascara?” Because I was buying mascara when I got the phone call from my neurologist about the results for my second MRI.

That wasn’t the diagnosis phone call, though. That was the, “It’s either bad news, really bad news, or inoperable-tumor-on-your-spine news” phone call. Not the kind of call you want to get in the Nordstrom cosmetics department. So I took it outside to the sidewalk.

The bad option was Transverse Myelitis, a virus that could possibly have gone away, and the really bad option was MS. I still didn’t believe it was MS. I was crossing my fingers that it was this crazy virus, which still sounded pretty scary. But then again, I said to the doctor, my sister has MS and it doesn’t seem like the end of the world….

“You don’t want to have MS,” he said.

After we hung up, I went back inside the store and bought my mascara. (The sales girl was really nice; she later sent me a thank-you card for buying the mascara, with something cute written about how my lashes would be the envy of all my friends.) I left the store and called my best friend while standing on the sky bridge above 6th Avenue, watching the traffic pass below.

I started experiencing symptoms in fall 2007, when I was in physical therapy for an injured knee, which then aggravated “nerve damage” in my right leg, supposedly caused by an old ankle sprain (I am accident prone). But then the PT started to make my left leg go numb, so the therapist sent me to a neurologist.

The third MRI happened on Friday, March 26, 2008. The doctor called with the results that same night so I wouldn’t have to wait out the weekend: about 20 inactive lesions on my brain. “I hate having to give news like this,” he kept saying. Boo fucking hoo, I kept thinking. This is your job. He’s not my neurologist anymore.

Many doctor visits, three MRIs and one very surreal year later, here I am. My symptoms from the original exacerbation have never completely gone away. It’s crazy to remember a time not so long ago when I wasn’t aware every day that I have Multiple Sclerosis. That reality has been supplanted by this one.

Anyway, it’s time to throw out that mascara. It’s waaay past its shelf life.


The Face of MS? by Nina

Well, in case you missed it. Montel was on Oprah today. He was crying his eyes out. I can’t believe all the tears that went on. He clearly is deeply impacted by MS. He says that his shot everyday is just more reminders that he has MS. A sad depressed reminder. Anyway, one and one he went. The tears kept flowing. He was depressing me!

And I can not identify with him at all. When he called himself the face of MS, I laughed. Not my MS! Maybe its someone elses MS. Is he your face of MS?

Sounding Off About Montel's Appearance on Oprah 

by Kelley

I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.

Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.

Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the National MS Society website:

In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.

Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.

Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.

Excuse me? Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:

Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)

Also, in the Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:

Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) p =" 0.01).">

I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.

I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.

Is some MS education, even incorrect, better than none at all? Please post your thoughts.

Peace,
Kelley

Montel talks about his MS 

by Joy

Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.

After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.

Bald Ben says Yeah, I know Montel Has that....

My Mom called me today to tell that Oprah was having a special episode with none other than Mr. Montel Williams and his amazing incurable disease. I am sure my interest in Montel is evident as you tune into my blog here, however, Montel aside, I have a bit of a rule in my house, there are a bunch of rules in my house, but one of the most sacrosanct is: No Oprah.

I really can’t stand this lady. She seems to have all the answers. The words that slip from her perfectly botoxed lips, the gestures that issue from her well manicured hands, the opinions that inform every cloistered plebian in the lower 48 is enough to make this bald guy grow some hair. I wouldn’t be surprised to find out she is only a step away from being canonized by the Pope. I would imagine she wouldn’t be surprised either. I just find it hard to believe that a multi-billionaire knows how I should live. Yeah, I got your favorite things right here lady. No one mouth should have that much power. She all but bankrupted the meat industry. To be fair, though, I’m not sure she realized that her voice was that influential at the time. Yet I still hold a “beef” with her because of what I call the “Tom Cruise Incident”.

Anyway, today I had to lift the ban. God I wished I hadn’t. I tuned in just in time to see Montel in tears, which was a regular occurrence throughout the hour long love fest. However, these tears were not for the incurable disease coursing through his body or the unstoppable pain he has in his legs. No these tears were for her Highness Oprah herself. I suppose at some point in his career, Montel, was compared to the big O and he needed to thank her. It was all very touching, no vaulting from the couch, but touching nonetheless. The rest of the episode was taken up with Montel’s battle with depression, more tears, his work out routine, more tears, his love of fishing, more tears, oh and his new book. It was all a bit much.

Now please don’t think that I am coming down on the guy because he openly wept. There is nothing wrong with it, I am as guilty of it as anyone else. Sometimes things get a bit much and a guy has to let it out. The issue I had with the show was it all seemed staged for the cameras. If you ever saw Montel on his show he was famous for shedding a tear or two in response to the latest depravity he chose to parade on his stage. The tears, no matter how real, rang very hollow for me. I’m not sure what I had expected, there was little information for a person like myself, dealing with the inevitabilities of MS. The episode was far more for the average Oprah or Montel fan than for those of us out here fighting.

I often felt like I was watching the “Last Temptation of Montel”. When he choked up as he told Dr. Oz he takes 26 pills a day and an injection, “365 days a year.” I was very close to flipping the channel. Perhaps it is the fact that I, like so many of you, deal with all of these things everyday. We don’t have TV shows, we don’t get applause. We quietly live our lives, wishing, praying that whatever it is we have today is what we still have tomorrow. We all know how terrifying this disease is, and I am sure it is just as horrid for Mr. Williams. However he has been fortunate enough to have carved out a very lucrative living, and bravo to him, however, he will never know what it is like to truly worry, not only about your disease, but how the disease is going to deplete you’re your savings. Depression, paranoia, guilt, fear, nervousness, not only stem from MS, but every time the mail is delivered these feelings are compounded by envelopes from the health care companies.

I suppose all I am trying to say is that I am glad that Montel was able to go on Oprah today to speak about MS. Any awareness is a positive thing. Although I do wish that it was less about the trials and tribulations of Montel, and had been more informative about treatments or perhaps the future of treatment. At the very least the guy could have made the point that he couldn’t jump up and down on the couch because MS affects his legs and he would just fall off.


I'm Not Ashamed To Admit When I'm Wrong by Tracys Ramblings

Montel had a great opportunity to tell all of Oprah's viewers the hardships that we have to deal with on a day to day basis while living our lives with MS. Instead, he failed. He was there to sell his book afterall.

I thought Montel would shine a light on real life when you're living with MS. But, in the words of the ever wise Chowder, "I was wrong, I was horribly wrong!"

Montel Educates Oprah About MS by Diane J Standiford

Okay, Montel Williams our MS unofficial spokesperson was on Oprah today. I didn't want to watch, but a friend thought I should. Please, I want to like him, I really do, but I just can't. Before I tuned in I suspected he would have yet another book out, promising to inspire and enlighten those of us with MS---but, no, I would reserve such cynical judgements----what ho!? Sure enough, he was there to plug a book.

Oprah: "What scares you the most?"
Montel: "That I won't be able to walk."

Well, that was fair enough, at least he is not afraid of not being able to walk AND see. He is not afraid of not being able to pay all his health care bills or make his rent payment AND not be able to walk, see, AND have a sick spouse.

Now he says he is a changed man. You know, all those people who never appreciated the best things in life and now since they have MS--EUREKA---they love their kids more, respect their wives, enjoy a fresh breeze, etc.

He takes TWENTY-SEVEN "pills" for his MS...did he mean vitamins? Munchkin to Oz---what message about MS are you giving to people? What are these pills?? GIMME A BREAK.

Okay, Montel and I won't be dining together any time soon, but here is what really knocked my striped socks off----Oprah didn't know what MS really was. Okey dokey, where is all the MS Awareness money going? If O isn't aware of MS, then certainly Joe the one-day plumber hasn't gotten the memo.

And what is this about suffocation? Glad I taped it, Dr. Oz said the number one cause of death for people with MS was SUFFOCATION? Sufferin' succotash! What? How? Suicide? Seriously? Not heart or cancer? Talk about bomb dropping, from all the doctors I've seen since my DX in 1990 the word SUFFOCATION has NEVER been mentioned.

I truly respect the way Michael J. Fox has handled his disease and his goal of finding a cure and getting funding for research. When he speaks, he educates, and it is never all about him. Egads.


This concludes the 32nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 9, 2009. 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 7, 2009.


Thank you.

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