What is Spinal MS?

Maybe you have heard the term “Spinal MS.” What is that? I thought MS could be relapsing, primary progressive, secondary progressive, or “benign.”

The lesions caused by multiple sclerosis can occur anywhere within the central nervous system, which includes the brain, the spinal cord, and the optic nerves. Approximately 55-75 percent of patients with MS will have spinal cord lesions at some time during the course of their disease. If a patient does have lesions in the spinal cord, he/she may be said to have Spinal MS.

A smaller number of MS patients, approximately 20 percent, may have only spinal lesions and not brain lesions. I am an example of one of those 20 percent of MS patients who only have spinal lesions.

Symptoms of Spinal MS

Spinal MS occurs more commonly with lesions in the cervical spine (the neck area) in approximately 67 percent of cases. Lesions in this area often affect the corticospinal tract. Neurological signs which indicate lesions in the corticospinal tract include the Babinski Sign and the Hoffmann Sign. Additional indicators of lesions in the upper spine include the l’Hermittes phenomenon and the Romberg Sign. At one time or another, I have shown each of these signs of neurological involvement/interference due to MS lesions.

Although the location of lesions do not always closely correlate to areas of clinical disability, there are cause/effect patterns which do emerge. Patients with spinal cord lesions are more likely to develop bladder dysfunction (e.g., urinary urgency or hesitancy, partial retention of urine, mild urinary incontinence), bowel dysfunction (e.g., constipation or urgency), and sexual dysfunction (e.g., erectile dysfunction or impotence in men, genital anesthesia or numbness in women, pain with intercourse for either sex). Complete loss of bladder and bowel control may be lost in more advanced cases of MS.


Spinal cord lesions can also lead to sensory and motor deficits, including dysesthesias, spasticity, limb weakness, ataxia or other gait disturbances.

Read this post in its entirety:

What is Spinal MS?

Peeing in the Street: Embarrassing Moments with Multiple Sclerosis

The #MSMoment I’d like to share happened several years ago, but I still remember it like it happened yesterday. I felt fortunate that nobody was around to witness it, but that didn’t make me feel any less embarrassed.

Every six months, I go to the dentist for a routine cleaning and checkup. That’s something we each should do on a regular basis, because it’s important for our overall health. On a beautiful spring day a few years ago, I left my appointment around noon. With no music lessons scheduled until 4 p.m., I had plenty of time to get some lunch, go to the post office, and stop at the grocery store on the way home.

After leaving the dentist’s office, I went to my car, opened the door, and sat in the driver’s seat. As I turned the ignition, thoughts of the bathroom flittered across my mind. I hadn’t noticed any urge to go to the bathroom until that very moment.

“Maybe I should have stopped at the restroom on the way out of the building?” I thought to myself. But then I would have had to ask for the bathroom key, go to the restroom, and take the key back to the dentist’s office, when all I wanted to do was get on with my day.

“I could go back in. Or maybe I’ll just wait until I get to the restaurant for lunch. That would work.”
Read this post in its entirety:

Read this post in its entirety:
MS Moments: Urinary Incontinence in the Street

Urinary Urgency and MS

For some reason, standing still for a brief period of time makes the situation worse. It seems that if I pause long enough to clinch my legs together, then the next time they relax – for example, in order for me to take a few steps – the muscles holding back the urine relax too and Lisa ends up with soaked underwear and most likely very wet pants.

Losing the ability to control the flow of urine is a common dysfunction in MS. So are problems with storage of urine, emptying of the bladder, or a combination of problems caused by detrusor-external sphincter dyssynergia (DESD) which is a lack of coordination between the different muscle groups that independently control storage and flow.

It is important to talk to your neurologist about any problems you are having with bladder functions. There are treatments which may help to reduce complications. But one thing you should NOT do if you are worried about incontinence is to dramatically limit fluid intake. You need to drink plenty of water to stay appropriately hydrated and to avoid aggravating bowel problems which can often accompany bladder problems.

For me, the onset of bladder problems coincided with a period of time where my MS was progressing somewhat rapidly. I was having several relapses with limited recovery in between. This was years ago, however.

Now, when I begin to have bladder issues, it is often because of a blossoming urinary tract infection or poor attention to my body’s needs on my part. I’ve learned that if the random thought of the bathroom crosses my mind I should act upon it, even if I don’t physically feel the need to go to the restroom…yet. I may not be able to FEEL my need, but my brain is trying to subtly warn me in advance that we’re going to have to make a move soon.

What’s your experience with bladder problems? Are there strategies that you employ to try to manage or prevent problems when you are out and about?

Read this post in its entirety:
Pardon Me, Excuse Me, I've Really Got to GO NOW!

It Really Might be a Bladder Infection, Not an MS Relapse

No matter how much I research MS, write about MS, and talk about MS as well as other health issues, I can still mis-read my own body signals and fail to go with the obvious.  I am not a medical expert, but a fellow patient learning to live with this disease as best I can.

I’m not sure how many times a community member has come online to ask advice about a possible relapse.  I usually tell them about pseudoexacerbations that can be caused by heat sensitivity or infection.  And, I always suggest that they call their neurologist.  I should listen to my own advice.

In my own case, I had initially considered UTI, but disregarded the possibility because  the symptoms were not constant.  I didn’t have a fever and didn’t ‘feel sick.’  I failed to refresh my memory and look up the common symptoms of a bladder infection which include:
    •    Cloudy or bloody urine, which may have a foul or strong odor.
    •    Low fever in some people.
    •    Pain or burning with urination.
    •    Pressure or cramping in the lower abdomen or back.
    •    Strong need to urinate often, even right after the bladder has been emptied.

My urine did not have any odor and I didn’t have a fever.  The pain with urination was temporary and I didn’t have any cramping.  My primary symptom, the strong urge to urinate, could easily be confused for MS-related bladder dysfunction.

So what have I learned from this experience?  Don’t make assumptions about bladder symptoms.  Always get tested, especially when it’s as simple as peeing in a cup.

Be well and I hope you are having a great summer!!

Read this post in its entirety:

Bladder Dysfunction and MS: Always Test for Infection Before Using Steroids

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).

Carnival of MS Bloggers #98

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

Eager Bladders, Fatalistic Humor, Caregiver Survey

I. P. Freely

by My Odd Sock

Nah, this isn’t about the work of legendary folk-lore author, I. P. Freely

It’s about bladder control pure and simple.  Or lack thereof in regards to many of us with multiple sclerosis.

You see, most of the time I HAVE bladder control.  This is about the times when my bladder controls ME!  Like a loyal dog to its master, when it goes–I go!

My problem usually occurs in the morning when my eyes are bloodshot and my bladder is brimming like a cup of Maxwell House.

I do my quickest spasticity-induced, “quasi-shuffle-foot drag” (Government moves faster!) into the powder room.  But it isn’t quick enough for my seemingly ping-pong ball sized bladder.

Typical view of preferred potty distance.

Vicinity when my bladder opens flood-gates.

Because my bladder likes to get a jump start on the day as soon as I cross the threshold of the bathroom.  (In Track & Field, this is known as a “false-start.”)

Needless to say, my day begins with damp UnderRoos.  (Stealing the slogan from Folgers….”The worst part of waking up is urine in your lap!”)

My sometimes accidental basement bathroom.

But the bathroom isn’t the only place where yours truly has had bladder issues…outside in the yard…in the basement…in the shower–wherever I suddenly find myself far enough away from the potty…and not enough leg umph to get me there!

My problem seems to occur when I wait too long.  Then, when it is too late–I have to go–and go NOW!

Luckily the urge has never struck when I have been in public.

I’m sure you can relate to urgency mishaps.  Do they happen to you?  Are you prone to have problems any particular time of day?  Ever have an accident in public?

Please share your story in a comment.  Your words will have me sitting on the edge of my (toilet) seat with anticipation!

So I doubt the work of I. P. Freely will ever match the popularity of a James Mitchener, Stephen King or J. K. Rowlings, but the impact of the author’s words influence nearly everyday of my MS filled life.

Why the long face?

by Andy of our lady of the multiple sclerosi

New Neurologist: The First Visit

 

Props: 

Projected Sign:  No Eating Nor Drinking While in This Office (We’ve had too many spills!!!)

Table

Eyeglasses

Hospital Gown

File and pen

Neurologist (writing): “Do you have any problems with your eyes?”

Me (seated – table): “Not yet.”

Neurologist (writing): “Do you have any problems with bladder, bowel control?”

Me: “Not yet.”

Neurologist (Removes glasses, looks up appearing exasperated already): “You really shouldn’t be so fatalistic. Any problems swallowing?”

Me (pausing): “No.”

Perfect Chicken Broth

by Whitney at Nutrisclerosis

Use 1 whole chicken don't forget the feet. Cut the chicken up, put the whole thing in the stock pot and just barely cover it with water. Add 2 Tbs. of apple cider vinegar and let it soak for a half an hour to an hour. The chicken should be truly free range, preferable raised by someone you had a face to face conversation with about it's eating habits (lots of grass, bugs, lizards, seeds, snakes, and corn with  no rat or mouse shit in it) and habitat. Also no hormones or antibiotics. I am very  much into finding delicious heritage breeds like Dorking or Rhode Island Red. Ok, moving on.

Bring to a slow boil all the while adding: a slice of lemon (I use the end about a third of an inch slice), 2 bay leaves, salt, pepper, 1/2 cup of fresh parsley slightly chopped, 1 or 2 carrots, 1 onion, 1 or 2 stalks of celery, 3-5 cloves of garlic crushed. Once it boils, turn down to low and simmer for 2 hours. Skim the scum.

After 2 hours take the meat off the bones and put the bones back in and simmer them for another 20 or 30 minutes. Turn the heat off, let it cook a little and then strain it and throw all the chunks out. That's it there's the broth. Don't skim the fat off it when it cools. Eat the fat, or skim it off and use it to cook something else. Or give the fat to me, I will use it. I use the meat in recipes, and usually freeze it. I also triple this recipe and make it in my giant zillion quart stock pot.

MS Caregiver Survey

I (Lisa) received the same following email asking me to post this survey in the Carnival, but Patrick went beyond the call of duty.  Read his post below and complete the survey before October 21, 2011.

[Patrick] Received an interesting email:

“Dear Patrick,

We, the Southeastern Institute of Research (SIR), are conducting an important research study on behalf of the National Alliance for Caregiving and the National Multiple Sclerosis Society. The study includes a survey that investigates issues related to caring for someone with MS and the needs of family and friend caregivers. Would you be willing to post a link to this important survey on caregivinglyyours.com? …”

 www.sirresearch.com/MScaregiver

For those who know me well, know I live and learn by questions. Noting a name and phone number at the bottom I called Heather Marron, Project Manager for SIR. She is indeed a real person and patiently fielded my questions.

More importantly I took the survey. It takes around 15-20 minutes though you can always save and return. It passed all scrutiny by my AVG anti-virus and anti-spyware defenses; ever the ‘doubting Thomas’ I also ran Spybot upon completion of the survey and it too found no prying eyes left behind. No name or contact information is requested, as anonymous and confidential as anything can be in this age.

Most importantly it really is an extraordinary survey. I’ve never seen anything like it and long overdue when it comes to trying to study us extremely diverse and unique MS caregivers.

“Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the [National] MS Society so that they can learn how to better meet the needs of those caring for people with MS.”

Please note you must complete the survey by Friday, October 21st and “for the purposes of this research study, caregivers are defined as family or friends, not professionally-paid caregivers.”

Of course if you have questions (and believe me I understand) Heather said it was fine to pass along her contact information: Heather Marron, Project Manager at SIR at hmarron@sirresearch.com or 800-358-8981 (ext 28) … or Anna MacIntosh, SVP of Research Operations at SIR at anna@sirresearch.com or (800) 807-8981 (ext. 18).

Take it and spread the word!
Caregivingly Yours, Patrick Leer


This concludes the 98th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 13, 2011. 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 11, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #75

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

Courage to Speak Up, Speak Out, and Share

Trapped in a Toilet

by Ragged Warrior

I was trapped in a toilet today. It was scary.

While out and about at an appointment today, I decided to find a salon for a shampoo and cut. I have been so weak lately that I have been unable to wash my hair myself. Since an entire week had passed since I last washed it, I thought the salon idea was a good idea. Unable to find one of the ‘cheap chain salons’ I found an independent salon that had a sign flashing: ‘walk-ins welcome’. OK, so I thought I would just ‘walk-in’.

The only problem was that it was next to a gym with full length glass windows. Ugh!!

I decided to waddle past the gym with my head turned the opposite direction. I don’t know about you, but I don’t want to be faced with skinny people jumping up and down for no reason. Plus, I didn’t want them to think that I cared if they pointed their finger at me and started laughing. So. I held my head high——and looked the other way while passing the spandex people.

I made my way to the welcome desk and asked if they could fit me in. Little did I know that the halls and booths in this salon were only 1 inch wider than my walker. And nothing could have prepared me for what would soon happen.

The receptionist said “yes, Tracy can help you in a few minutes”.

“OK” I replied.

I entered the salon area and pushed my walker through the aisles knocking brushes, hair sprays, and applicators to the floor. Women of all sizes and shapes quickly took refuge in all the nooks and crannies they could find, while beauticians pressed their bodies flat against their workspace. I pretended I was OK, but the truth was, I was struggling for each step. They turned away from me; perhaps hoping that they would never be in such a condition. People dressed in suits walked out of their offices, only to see me and turn back around. I hate it when faced with my own mortality, how about you? Plus, you know when you are traveling down the highway and you come upon a ‘wide load’, well it was sorta like that. They kept moving ’round and round’.

Suddenly, I wondered if my bladder might be full. You see, when you have MS, things like bladders don’t work like they are supposed to due to nerve death.

Some ladies are unable to control their bladders and have to carry various items with them. My friend has this. There is a special protocol that these ladies follow. First they use their containment buoys, “bam bam” my friend says, placing the buoys around her leaks. If that doesn’t work she throws trash, straw, hair and golf balls at the leak. The last resort is a concrete hat—it’s so hard to mix up the concrete though. When I am with her I remember to bring rags.

Then there are people like me. We have to push on the darn thing to get it to empty. And that is where our story begins.

So, I nonchalantly enter the handicapped stall and secure my walker. I sit down and begin to think about how I will complete this task. I muster up enough courage and plan the attack. I began pushing with all my might when to my horror, the toilet seat changes its axis violently, with no thought of my personal needs.

I cry out to God.

“Oh Lord, please say it isn’t so please God”.

It’s a true disaster, like an earthquake with Niagara Falls and the Hungarian sludge thrown in for good measure. I begin the inevitable ‘Slip n Slide’ down to the floor, my foot pushing a roll of toilet paper to the other stall. I grab the toilet paper holder and inch my way back up the toilet.

“Oh God!! NO NO NO” I cried!! Please help me Lord…..Jesus what do I do”.

This is where retroactive prayer comes in.

I say to God: “lord…..could you please pretend that I prayed about this this morning”?

I muster my strength to assess the damage. “Lord Jesus please help me” I muttered to myself.

“Oh no Lord….please tell me it isn’t on my clothes…what will I do”. Peeling off layers of clothing reveals the truth, it’s everywhere, in the front and back and down a leg. I am downhearted and blue.  What will I do?
I panic looking for a back door that I could escape from—there is none.

Oh, maybe there are…..paper towels………..oh man—it’s the blower type. I can’t get my rear up that high plus it would look suspicious if I was caught.

I’m trapped–I must plan an escape.
I could stay here and ask that they call 911.
I could glide on the wet path to the front desk and tell them I had a phone call of a serious nature.

OR

I could walk with my head held high, and have the girl do my hair. So, I decide on the latter, I will just pretend that nothing is wrong. If I talk enough, smile enough or laugh enough maybe she won’t notice.

So, that’s what I did. Did they notice? I don’t know. Am I going back? Not in a million years!

Did this really happen? Oh yes!!!

From now on, my friend and I will tag team.

Finding your Voice…

from Carolyne's MS Odyssey

You know, it’s funny – most people would not describe me as a person in any way fearful of speaking her mind. In fact, quite the opposite – I am considered, as someone at work once put it, a “calm, funny, and politely pushy woman”. I took that to mean an assertive woman who gets things done!

As MS’ers, we each have to be our own advocates, and speak out about our health, speak about our needs, ask about options, and so on. We must find our voices when dealing with our situations – especially with the medical community. I am well known within my own circle as someone who speaks her mind, challenges doctors if I feel it is necessary, and is generally not afraid to openly discuss any aspect of health situations & improving health with people. OK – I am pretty much not afraid to discuss anything!

That being said, I had another “a-ha” moment the other day when my sister and I were  discussing the peace of chanting in yoga. I had never felt comfortable doing any chanting – but I enjoy listening to others chant. And I only whispered “namaste” very quietly, feeling too shy to speak it loudly enough to be heard. Namaste means “the spirit in me honours the spirit in you”. So when my sis challenged me to speak my inner voice – voice the word Namaste with feeling…well, I froze. The very thought made me tense up. And it made me wonder – why? Why was I afraid to speak loudly enough to be heard?

I pondered this in the woods the other day. SuperMike and I drove down to the south shore, quietly enjoying the brilliant fall colours and each other’s company. At his camp, while he closed things up, I wandered around a bit, and smelled the crisp air, shuffled my feet in the wet leaves, and simply breathed. At one point, I closed my eyes and whispered “namaste” to the trees around me, reveling in the feeling of nature and the sound of the wind through the trees. Did I figure out why I was nervous about speaking out loudly? No. But it struck me – I had not been down in that area of the province in over two years – since shortly before my accident. Wow – had I ever missed it!

Well – I have begun saying “namaste” more loudly – loudly enough so that the people beside me can actually hear me. And you know what? It is actually a freeing & personally charging sensation! Who-da thunk something so simple could feel so empowering? And it is already translating into other aspects of my life – I found myself saying “No – I need my rest” to people at work requesting more of my time than I could afford to give; I found myself speaking up in situations where I had been taking a back-seat roll. I am the kind of person that will put herself last in efforts to make sure those around her are comfortable and happy. Finding my voice, for me, meant finding the voice that says “I need to take care of me, too – and that’s ok.” For me, I had to embrace that “namaste” means also to honour my own spirit… and follow whatever form that may take in the moment.

That’s exactly what we have to do with MS every day, too, isn’t it?
Namaste.
Carolyne

Part Two Taboo

from Kaleidoscope Muff

Since the blog police didn’t arrest me for my last post, I’ll continue with the second part of this verboten subject. Now, while the bladder blues started for me a while before I began to seek answers about my walking, the bowel bouts didn’t begin under I was going through all the testing. At first – here we go with denial again – I assumed it was caused by the anxiety I was experiencing, but as I researched on my own, that item kept cropping up. If I couldn’t discuss my dampness problem, I sure as H%*# couldn’t talk about this one!

My first real ‘situation’ occurred once again in my classroom – I feel at times that I almost lived there! Since I was a child, I had experienced irregularity. No amount of fruits, veggies, or grains could change me, and I just learned to live with it. That sensation increased as the MS progressed, but it was soon accompanied by another doozey – urgency! As I said, I thought it was an upset brought on by worry, but it wouldn’t go away. I’d be teaching, and suddenly I felt as though I would burst. I’d get a teacher to cover, and I’d make a beeline for the teachers’ lav. At that time, I could still move a lot quicker, and I always arrived ‘in time.’ That wouldn’t always be the case, though. Once more, I was on an evaluation trip not too far from home. The school had presented a beautiful opening ceremony; then they took everyone to a nice German restaurant for dinner. The foods were delicious, but ever so rich. As the evening began to wind down, I felt that feeling inside and I panicked. The room was full of people; how was I to escape? Fortunately, one of my team members came over, and I said we’d have to get to the hotel for our opening meeting. Without my asking, she gathered the coats and I could throw mine on and get out quickly. Once in my hotel room, I could take care of the matter. I escaped what could have been a totally humiliating experience.

Those events continued to happen, but fortunately always at home, and I could move quickly enough. Once more it occurred during a field day in my last year of teaching. Again I lucked out in that I could get home in mere minutes, remedy the problem, and get back to the field day. When I was a principal, it happened more and more – after a dinner out with some teachers (I literally had to dispose of my inner clothing, and wrap myself in paper towels,) on a drive home (it was a forty to fifty minute drive,) and once after everyone left for the day and I was alone. After that, I watched everything I ate, and I always escaped the embarrassment that could have ensued.

After I left the work world, I was able to once again time everything, and I was mostly at home. I had to let Hubby in on what was happening, and he often became my savior by helping me out. Now I keep track of when it might occur, and the worst of it seems to be gone – it’s about ten months between events now. I feel lucky that I’ve gotten away without being ‘caught,’ but I realize it could happen at any time. Two years ago, we left a summer party early because I felt things moving quickly, and I knew I wouldn’t make it home in time. I miss out on a lot just to avoid ‘losing it!’

I know that others have probably experienced similar situations, but I often feel so alone with it. I’m a private person in the real world, and I absolutely could never talk about this. However, here in my little virtual existence, I feel I can let it all out and be honest. So this will conclude my discussion, and I’ll go back to babbling about more appropriate topics. Thanks everyone for your support.

Peace,
Muff

Warriors

from Judy of Peace Be With You

I admire people
whose courage makes them willing
to slay the dragon.

They don’t run and hide.
Jaw set, eyes on fire, they fight.
Best kind of ally.

I am quite grateful
that some of those warriors
are fighting MS.

This concludes the 75th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 18, 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 16, 2010.

Thank you.

Comments for this post.

Embarrassing Moments in the Bathroom

As I was telling you about my recent adventures in Switzerland, I left out one event mainly because it deserves a post all its own.  I didn’t tell you about my experience with urinary incontinence. 

While exploring on the Saturday during my trip, we made our way to the Kunstmuseum (art museum).  My first stop was the restroom because my bladder was on my mind.  I was wearing a simple pair of jeans; not much to deal with besides a button and zipper.  However, this was one of those occasions where I couldn’t get everything undone in time to avoid soaking my underwear.  Very embarrassing, I know, but an important topic to discuss none the less.

Read this post in its entirety:

Taking MS On the Road: Urinary Incontinence and Embarrassing Moments

Bladder Symptoms and Multiple Sclerosis

BLADDER DYSFUNCTION is common in multiple sclerosis, in people with minimal symptoms and those with major impairments. Effective bladder management strategies make it possible for people with multiple sclerosis to pursue daily activities and participate in the world with comfort, dignity and confidence. With appropriate diagnosis and treatment, the incidence of bladder complications is greatly diminished. It is important to remember that:

* Bladder symptoms may be responsible for withdrawal from social and vocational activities.
* Frequency, urgency, and incontinence may negatively affect interpersonal interaction.
* Bladder involvement may threaten the individual’s health, with complications leading to serious morbidity.
* Bladder symptoms are often mismanaged, precipitating such problems as acute urinary retention, damage to the detrusor (primary bladder muscle) and urinary tract infections (UTIs).

Read this post in its entirety:

How to Manage MS-Related Bladder Dysfunction