Thursday, February 26, 2009

Carnival of MS Bloggers #30

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

Bizarre Symptoms, Mechanics, and Love


Stoopid MS Symptoms 
by Blindbeard

I have such a strange hodge-podge of different symptoms from my MS that I feel I need to share them. I know we all have weird things that are hard to explain or not "major" enough to contact our neurologists about, yet they are annoying just the same. There are the common things that most of us can relate to, then there are the things that seem like strange quirks. I'm having some strange quirks right now, so I want to share them in case someone else out there is having some of the same problems.

I have random itchy spots. I have itchy spots on both upper arms, a spot on my upper right chest, a few on my sides and on my mid thighs. They drive me crazy and make me itch and itch until the skin is torn up. I clipped off my nails so I could minimize the damage to my skin, but all I want to do is scratch myself bloody.

My right ear is twitchy and itchy, especially right behind it. I have to rub it every few minutes to make it calm down. I get these shocks around it and up into my hair line -- a twang and vibration that is hard to explain, yet really annoying. My little sister and I were shopping yesterday and I played with my right ear almost non-stop. Made me feel like I had a dirty ear that needed a finger in it at all times. And if I wear a hat it is worse. It intensifies the yucky feeling behind that ear and makes me dig up my hair until it looks like a tornado took off on the right side of my head.

I have facial tics that make me contort my face and make stupid faces. I know I've mentioned this before, but I find it really irritating and embarrassing. My forehead wrinkles than straightens out in quick succession, and around my nose is twitchy and likes to pinch in making me grimace (not to be confused with the guy who likes hamburgers). So I wander around in public grimacing and with my forehead working overtime -- not exactly the most attractive look.

I have trigeminal neuralgia that comes and goes. I will be good for most of the day and when I start getting tired my face starts to hurt. It is along the right side of my face into my jaw and teeth. When it is flaring up I don't want to move my face at all. I avoid talking, eating (too bad it isn't in full flare-up, I lost almost 10lbs the last time it was at full force) and anything that might touch my face, ie no makeup. Not sure if this is related to my TN or just MS in general, but I have decreased taste on the right side of my tongue. Does anyone else have that too? I wonder if it is more common than it seems -- I'm not sure I've ever read about decreased taste before. I might have and just forgot about it; my memory is not so hot some days.

I have a hard time getting my body into the correct positions in chairs. It seems like I can't remember how I am supposed to sit anymore. I shift and shift but can't find a comfortable position. I can't remember how I used to sit and it bothers me that in chairs I look like I have a poker up my wazoo. Sometimes in bed I will toss and toss trying to find the old way I used to sleep but can't find it. Somewhere along the line I lost the ability to figure out how my body used to be in repose and I'm not sure I'll ever find it again. I know that is not a major thing, but it is majorly irritating.

I could probably think of more things, but Princess had her cousin spend the night last night and they are wild and hyper this morning; distracting me with constant chatter and questions. This probably goes without saying but I'll say it anyway: I would love to hear about any strange symptoms that you have. After all misery does love company and I can't exactly send these wild girls to your house, which you should be very glad of -- they ate all the good food in the house.


I have seen a few picture galleries of close ups of electronic equipment and thought it would be neat to try some myself. They look like mini industrial cities or industrial parks. Of course I swiped, with permission, a dead motherboard from someone's laptop at work. Cool, eh?


I find the mechanical components quite fascinating, more so than the electronic parts for some reason. Perhaps because I seem to have a love/hate relationship with electricity and negative experiences with static (pun intended). Perhaps because I can never seem to remember Ohm's Law. Or perhaps because it's just one of those things I can't seem to wrap my mind around. Like time travel.

When I was first learning to drive, I was very frustrated because I just didn't "get" how cars work. And why did we only use one foot for two pedals instead of both feet?

Same thing with computers. Punch cards? Just one of those things out of place and I was destroyed for another 7 hours.

So anything more complex than a simple machine seems to be beyond my grasp. Give me a wheel, a pulley, an incline or a lever any day. They were good enough for Leonardo da Vinci. He came up with flying machines and submarines without knowledge of electricity or electronics.

Thank God that electrical things are of interest to other people and that wonderful things can come of that interest. Like lights in the night time. Radio. The internet.

Of course, electricity powers our bodies, though to a lesser degree. It is no less important. Without electricity in our bodies, we'd have no thoughts, heartbeats, or life as we know and enjoy it. For those of us with MS, we need stronger and more resistant insulation to cover the nerves that conduct that electricity.

Power companies have to spend money to maintain power lines, poles, transformers and the billions of other parts that keep us in the light. As MSers, we have to try to maintain our infrastructure as well, through diet, exercise, and mental stimulation. Some of us take medications that, like the power company linesmen, try to prevent power outages and maintain the system.

My dad is a retired electrical engineer. He understands all that electrical stuff that I don't. When I was five he took us for a drive to the construction site of a transformer to show us what he did for work. It wasn't until I was 16 or 17 that I finally understood what he did. I've been to a few of the other project sites that he worked on and while I found the experiences interesting, to be honest it was the mechanics of everything that I found most fascinating. Hydro-electric site? Never mind the electricity the water would generate, I wondered how the water tanks got full, how the dams opened and closed. Looking at the electrical plans for different buildings I wondered more about the blue ink used to print the plans or the different symbols on the paper. Sorry, Dad. I am amazed that human beings have figured out how to harness various sources and turn them into electricity; I just have a mental block when it comes to understanding how it works. I just know and trust that it does.

I also know and trust that there are people who understand the mechanics and electronics of the brain. They are the people we MSers are counting on to fix our power bumps.


Today would have been my grandfather's birthday. And though he's been dead a number of years, I think about him everyday - or at least every time I drive a car or open a locked door.

He was always free with advice and he often reminded his grandchildren to "not be a key turner."

My grandfather lived on the same street for most of the years I was growing up. He did his best to make sure I wasn't a key turner.

A key turner is a person who knows how to jump in the car, turn the key and go. A key turner does not know what to do when the oil light flashes, how to fill a gas tank, change a tire or what transmission fluid smells like. A key turner would never look at the drippings in the driveway and conclude something might be leaking.

You can bet I knew a lot about what was under the hood of my car when I first began driving. I knew that turning a key was just a tiny part of the process of making a car go from one place to another. I knew that knowledge and maintenance contributes to successful driving.

That key-turning business applies to more then cars, of course.

It applies to all things mechanical. I knew how to oil my sewing machine and keep my bike running. He made sure I could do minor repairs and maintenance on the washer, dryer, dishwasher, stove and lawnmower

The key-turner philosophy also applies to a person individually. It is up to you to know as much about you as possible and become your best advocate.

Just like your driving habits may mean your car never gets the miles per hour promised on a sticker label , your multiple sclerosis may differ from your neigbhor's MS. You may never need a wheelchair, you might need one a year after you are diagnosed. You may be able to keep working when someone else can't. You might only read, not experience, the Lhermitte's Sign's flash of electricity along your back..

Remembering that "your mileage may vary" helps me speak up when a doctor tries to prescribe a drug I know won't chase an infection away even if "it works for everyone else."

Being everybody else never was a goal in my family.


Is He Going to Leave You?
by Screaming Richie
When it was diagnosed that Herrad had MS and as it became obvious it was going to be really shitty people started asking Herrad about me. “Is he going to leave you?”

Funny till that point it had not occurred to me that I could. I could not see why I should want to. Herrad and I are a partnership. MS was happening to us. At first I was a bit shocked. How dare people even think I would shit on the love of my life just because things get rough? I would expect Herrad to care for me in similar circumstances. My Dad didn’t get on his bike when my Mum got cancer. He nursed her through the painful last days of her life. He and I may not have always got on but that is something I love him for- he loved my Mum.

I started to read blogs and chat rooms about MS and then found the reason for the questions: lots of men run when it starts getting nasty.

I was a failed comedian with no job, house or visible means of support when we got together. I guess I didn’t fall into the “most eligible” category. Many of Herrad’s friends are middle class. Not every one thought Herrad was very wise to get involved with me. They have known men from their background who bottle it. Cut and run in the cruelest most selfish manner. “Good men”- lawyers, business men and the like. So OK it would not be too strange for a scruffy geezer like me to sneak off- I screwed most things up- why should this be different?

So I decided it was amusing when Herrad’s aunty Sigrid called from Canada every month and asked if I was leaving. She wanted to be re-assured because she had talked to people with experience of this disease and many of them were dumped by their partners.

I am going nowhere without my Herrad. Sigrid now thinks I am quite a guy. She sends me her love now and asks what I am cooking for dinner. If anyone else thinks I am not good enough for Herrad they can stick their opinion where the sun don’t shine. The rank is but the Guineas stamp, the mans the gold for all that.

It is not easy dealing with the hard stuff but I would not to hide. I chose right and I salute all you men and women who have made the same choice as me. Let love rule.

Let Love Rule!!! What a great philosophy.


This concludes the 30th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 12, 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 Monday, March 10, 2009.

Thank you.
Comments for this post.

Thursday, February 12, 2009

Carnival of MS Bloggers #29

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

New Symptoms, New Research, New MS Bloggers



Do you know how people say, "I was so shocked that I almost fell out of my chair!"

Well, I did. Fall out of my chair, that is. Not once, but twice and shock had nothing to do with it.

The first time was a couple weeks ago at Ken's house. It was a rolling desk chair and I was in the process of sitting down. It was kind of a slow motion thing that ended with my ass on the floor. I thought maybe his desk chair wheels were faster-moving than what I was used to or that he had recently waxed his hardwood floors. Uh-uh. Apparently, it was me. Ken was right there and, although he seemed surprised by my lack of grace, he didn't seem overly concerned with the cause. So, I decided to forget all about it.

Until it happened again.

A week or so later, I repeated the whole thing while sitting down at my desk chair at work. One minute, I was lowering myself into the chair. The next I was on the floor. I work at a very casual office and my office attire usually consists of jeans and a sweater or a blouse and a jacket. On this particular day, I decided to dress up a bit. I'm not sure why, perhaps to give my coworkers a show when I landed on the floor.

I had on a fitted chocolate brown sweater and a straight leather, knee length skirt with an earthtone patchwork design. Thank GOD I was wearing pretty thick, chocolate brown tights and tall boots. Nevertheless, I was rolling around on the floor, in a skirt, trying to get up when I heard my coworker in a nearby cube say, "OH MY GOD! What happened? Are you all right?"
It was kind of hard to blow it off in this setting. First of all, there was a carpeted floor and it was the same chair that I'd been sitting in since I started working there last April.

So, it seems that I have a new MS symptom to add to the list. Falls out of chairs. I'm imagining it's balance related. All I know is that it definitely left a mark--on my ass and my ego.

When I discussed the second fall with Ken, he reminded me about the first fall and I thought Uh-Oh. He also proceeded to give me chair-sitting instructions complete with chimed in advice from his 13-year old son. "You have to reach back with your hand and hold on to the chair, making sure you are looking at your seat before you attempt to sit down," they explained, as if I was a little slow or had recently suffered a head injury.

I found this all incredibly amusing since I have been sitting down on my own for quite some time, at least 42 out of my 44 years, I would imagine. I didn't know that there were rules to sitting and that, if I violated these rules, I might end up on my ass.

When I pointed out the humor in this advice, Ken clarified, saying that because I'm having eyesight and balance issues, there are new rules.

New rules? Why wasn't I notified? Where's my copy of these new rules? If I'm expected to obey the rules, shouldn't I have an opportunity to study them and challenge the rule makers?

Will there be any other new rules coming my way? Should I give up sitting in chairs with wheels? Or, should I stop wearing skirts and start wearing a crash helmet?



I was reading Ladies Home Journal Magazine this week and they had a 3 page article on drinking Tea. They spoke of all the health benefits including increasing your bodies Interferon's. A Harvard study suggested that drinking 5 cups of black tea a day for two to three weeks increased production of a key immune protein, interferon. They said the reason was that L-theanine, an amino acid found in tea (and hardly anywhere else) can build up the bodies immune system and defenses against viruses and bacteria.


They also credited tea with sharpening your brain, boosting your powers of concentration, as well as relaxation. Drinking a cup of hot tea is relaxing. I will not quote the entire article, however, I do recommend giving it a read. I was intrigued, researched and found that Harvard did conclude the benefits in a 1998 study regarding Interferon's and L-theanine. It seems that all Teas may offer some benefit, however, only black tea was tested. You can also drink Green Tea, White Tea and Oolong Tea. The herbal teas, such as, Chamomile, Cinnamon, Ginger, Peppermint etc have their own health benefits as well, but were not included in the study.

This is a quote from the Harvard Study:
"Then, two weeks into the study, the researchers tested the blood of coffee and tea drinkers by exposing it to bacteria in the lab and comparing samples taken before the study to those taken two weeks later. "We found they [tea drinkers] made five times more interferon after they started drinking tea compared to before drinking tea," Bukowski says. The coffee drinkers showed no enhanced production of interferon."
So, I am going to start drinking 5 cups of decaf black tea five times a day and try to add it as part of my lifestyle. So maybe I can increase the Interferon's in my body without being on any Interferon shots. Hopefully, it will work or at least help. Can't hurt to test this theory. I'm tempted to see if my doctor has a way to measure my current interferon level and then again after a few weeks or a month. I'll have to investigate that.


Carla of Beyond It All says
"I am not drunk..."

Walking with an unstable gait, tripping, bumping into things, stumbling down the stairs, not being able to see clearly at times, fatigue, not being able to remember a specific word, name or phrase, not remembering what I’m doing, and so on are just some of the daily challenges I try to put in the back of my mind until it takes front and center stage as it did last night. As I was getting ready for bed in our bedroom, my legs decided to “give out” on me, but fortunately, I fell on the bed and not the floor. I decided to go to sleep right then and there. After chatting with a few people online who also have multiple sclerosis from the confinements of my bed via the Blackberry, I learned this is common with some people. This morning my doctor gave me a few suggestions including using a cane (!). I guess I wont be running anytime soon.

As I write this, it actually sounds worse than it really is but restrictions such as not being able to walk straight or worse, having increasingly poor cognitive skills are constant reminders of my limitations. Fear of falling down the stairs or worse are thoughts I try not to dwell on. Putting my pumps away in storage and searching for more ballerina flats online to replace my “cute and sexy” footwear is a minor lifestyle change that I do welcome in a way. Hey, its shopping!

Working at home on my website, blogging, conducting personal relationships, running errands, household chores, etc is difficult at times but manageable. The real challenge and sometimes shame and embarrassment happens at work. Awkward, clumsy, forgetful, distracted are just some of feelings I try to dismiss. The fear of someone noticing some of my challenges sometimes flash across my mind.

I’m sure I’m making too much of what others think but I did feel the need to tell my human resource manager last week about what I’m dealing with. I don’t remember my motive for telling him at the time, (it may have been fear) but I’m glad I did. Time off for doctors appointments and possible rest days were some of the things we discussed. When he gets back from his vacation next week, we will go over ADA policies, and my short and long-term disability benefits - if it comes to that. Hopefully, it wont.



Being disabled I use one of those electric carts to do my groceries. On Thursday, like many times before, a nice person offered to help me load the groceries in to my car in the parking lot. I guess she saw me with e-cart and trying to load the groceries in the back seat and wanted to help. Many times before, I would decline the offers for help. Then I realized that by refusing someones offer to help I was sort of being rude. Out of my own pride and suspicion from the jaded atmosphere of the Miami city scam world, I would say no. I felt that if I accepted I was being helpless. But recently I have found that people are trying to genuinely help, especially in this area, for now anyway, from the bottom of their hearts. So I have decided to accept those kind offers for help in reaching for something, putting the groceries on the cash register area, etc. anytime that a person offers their kind offer to help me. Needless to say it was a good feeling after I was helped the kind person chatted with me some small talk and went on their way. Like I said little things are always there that keep you going.


Tingly Feeling discusses
The Family Business

I’ve mentioned on Twitter and in a couple posts here, that my sister also has MS. She was diagnosed with relapsing/remitting MS in January 2000 at age 27.

Several years before her diagnosis, which was finally confirmed by an MRI, she’d been experiencing some symptoms and was given a spinal tap. It was 1994, I think. I was a sophomore in college, not living very far from home, but far enough that no one told me what was going on until it was over. They didn’t diagnose her then, so the topic was dropped and we all went about our business.

But in the following years, she’d still experience mild symptoms like facial numbness and ticks. She finally decided to see a doctor in 1999 after she noticed that she could only smile with half of her mouth and her eyelids were twitching uncontrollably.

Our family barely knew what multiple sclerosis was. I remember stumbling over my pronunciation of those words when she told me, double-checking to make sure I was saying it right.

So she’s been living with it–as long as she’s been aware–for nine years now. Her symptoms, which seem to be getting worse despite a lack of new lesions, are different from mine, but there’s some overlap. We can describe the myriad strange sensations caused by our symptoms and usually we understand each other because we speak the same language now.

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Which is funny to me for several reasons, but mostly because we are such different people and our lives and the paths we’ve chosen have very little in common.

When we were growing up, we shared everything but a room and had sets of matching clothes and toys–one of each, in different colors so we could tell them apart. But we still had very different tastes. She painted her bedroom peach, I painted mine blue. She’s a little bit country, I’m a little bit rock ‘n’ roll. We don’t even look alike. She has red hair, I have brown hair. I’m tall, she’s short. And we think differently. She votes conservative (assuming she votes), I vote liberal (I like to exercise my right).

Now, we’re dusting off and strengthening our neglected sisterly bond because we both have MS. Some have said to me that it must be a blessing in disguise because it’s bringing my sister and me closer. I see their point, but I’m not quite on board with that. I do love my sister, but I’d much rather have something in common with her that didn’t suck so much.

Like a shared passion for breeding cockroaches.


In conclusion, Julie asks -

Every now and then I have a major realization about my MS. This time it came from a very hopeful article about using our own stem cells to reverse the damage (including vision impairment) caused by MS. The part that kicked me in the butt, though, was the line where the author said that, after out 10-15 years of having relapsing and remitting MS, the disease progresses to secondary progressive. It was stated as a universal fact.

Is that true? Is it 10-15 years after the diagnosis or the onset? And, if you aren't sure when the disease came alive in you, how will you know when you're time is up? And, since this is an unpredictable disease how the heck to you prepare for it to get worse? If you build wheelchair ramps and you go blind, you are shit out of luck. How will learning Braille help if you lose all short term memory or bladder function?

When I was pregnant with Ruby, I had 40 weeks to prepare. I bought diapers, took an infant CPR class, saved up sick time for maternity leave, and decorated a nursery. I read a ton of baby books and, after she was born, I kept reading, trying to stay a month or two ahead of her latest development.

When Zane was born 12 weeks early, I obviously didn't have as much prep time, but it was ok. I had done it before. I knew how to breastfeed and change diapers, and, in the 8 weeks he was in the NICU, I had tons of time to learn from the nurses, read preemie books, etc.

How is that possible here? I've read a TON of books about MS but they all basically say the same thing. It's a crap shoot. Then, there's the conflicting information. Use disease modifying drugs. Use LDN. Reject all the drugs and just change your diet. Eat lots of protein and low fat. Fast. Rest. Exercise. Keep busy. Rest.

I've figured out how to live with the MS today. I try to digest all the advice, listen to my heart, find people I trust, and take what I like and leave the rest. I give myself 3 injections of Rebif each week; I pray and meditate; I try to keep to a low-fat, low sugar, dairy free, red meat and pork-free diet; I do yoga; I walk; I write; I try to not be my former freakishly strong macho self when I'm not being a "non-compliant patient," I get my monthly Solumedrol infusions; and I try to live one day at a time.

But how do I prepare for the future? Am I being Pollyanna or Annie, to just trust that if I play "the glad game," "the sun will come out tomorrow?" Should I be DOING something?


This concludes the 29th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 26, 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 Monday, February 23, 2009.

Thank you.
Comments for this post.

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