Thursday, April 30, 2009
Myth: MS is a strictly neurological disease.
Fact: MS is actually an autoimmune disease with neurological effects. Essentially, in MS the person's immune system mistakens certain proteins in the myelin sheath (fatty layer covering the brain) as an invader to destroy. When the immune system attacks the myelin, it causes lesions. Because myelin is the brain's insulator, when it's worn away the brain's signals misfire causing a wide range of neurological effects. The word 'sclerosis' literally means scars. So, Multiple Sclerosis means 'many scars', which refers to the scars left on the brain from the attacks on the mylelin. Picture a lamp with a plastic coated power cord. Use your nail and wear away a part of the plastic coating, and you will expose the copper wiring. Because of the exposed wiring, your lamp malfunctions. Sometimes you turn it on and it works fine, other times you have to wiggle it around to make it turn on at all. Sometimes it'll start shorting and blink while in use. Eventually, the copper wiring because to rust from exposure, and the lamp stops working entirely. That... is MS. The copper wire is the brain, the plastic cord is the myelin sheath, and the effects on the way the lamp works (or doesn't) is the faulty signals the brain sends because of eroded myelin.
Myth: MS is a painless disease, because the brain can't feel pain.
Fact: 70% of all MS patients deal with some degree of pain in their daily lives. This can include nerve pain, pain from muscle spasms, girdle band pain (squeezing pain around the torso), and a vast array of painful skin sensations. The pain can be very mild to quite severe, occur anywhere in the body, and can vary greatly from day to day. The reason? It isn't due to bodily injury, it's because the brain is sending faulty signals due to the lesions. For example, an MS patient may feel extreme pain in the feet making it impossible to walk, yet there is nothing wrong with their feet. Unfortunately, contrary to old school myths, MS can actually be a VERY painful disease.
Myth: When a MS isn't having an attack, the disease is in 'remission' and not progressing.
Fact: MS can continue to progress even when not in an attack. This is a relatively new finding, until recently it was thought when a person wasn't in a full-blown attack, the disease laid dormant or went into remission. We now know this is not true, and that MS can be progressing even when there are no outward symptoms to show the progression. This is a key reason why taking drugs to slow the disease's progression is so important to most doctors and patients.
Myth: Only white women between the ages of 20-40 years old develop MS.
Fact: Anyone, regardless age, sex, or race, can develop MS. While white women between 20-40 years old are more likely to develop MS, the disease can and does effect anyone. The youngest person on record with diagnosis is 2 years old, and people are sometimes diagnosed well into their 80's. For reasons still not known, men actually tend to progress faster in the disease than women do.
Myth: All people who have MS will end up in a wheelchair.
Fact: Only 25% of all people with MS have to use a wheelchair or remain in bed due to inability to walk/move. Granted the longer someone lives with MS, the more likely the disease is to progress to the point that a mobility aid is needed. However, many MS patients who use scooters and wheelchairs can walk, but use aid due to weakness or for the sake of safety when gait and balance are severe issues.
Myth: MS can be cured through special diets.
Fact: There is NO cure for MS. Sorry folks, if a diet could cure MS, then you'd never see people living for decades with this horrific disease. While disease modifying drugs can slow the disease's progression, and some supplements such as Vitamin D have been show to help, as of the time I am writing this blog MS can not be cured.
So there you have it...some of the most common myths about Multiple Sclerosis debunked.
Be well all!
Friday, April 24, 2009
Four out of 10 (40%) members of the public could not name a single symptom of MS, which include loss of sight and mobility, fatigue, numbness, bowel and bladder problems, muscle stiffness and spasms.
The poll of more than 2,000 people also found 6% attributed MS to "public health issues" such as obesity, poor diet, smoking or germs.
Meanwhile, four out of 10 (40%) thought all people with MS ended up in a wheelchair whereas just 20% do.I wish I could say these results shocked me- but they don't. I can not begin to tell you how many people I've come across since my diagnosis with this disease that are truly clueless about it. The fact this survey showed how ignorant the general population is doesn't shock me- the fact that it IS ignorant is what I find shocking. By most estimates, over 2.5 million people world-wide suffer from Multiple Sclerosis. Roughly 400,000 of them live in the United States. Mind you, those are only the diagnosed and documented cases. If you took all the people with this disease fighting for a diagnosis and those completely undiagnosed, some experts guess that would increase the number of people in U.S. with it to at least 500,000. So how is that a disease that effects millions world-wide, and a half million right here in the U.S., can be so grossly misunderstood?
My theory on this two-fold: The symptoms of MS are largely unseen until you progress in the disease, and no one "famous enough" has been diagnosed with it.
To back up the first part of this theory, take me for instance. Right this moment, I do not walk with a limp or have an odd gait. My limbs aren't flailing spastically and I'm not in a wheelchair. If you saw me on the street, I look just like any other mother playing taxi driver to her kids. Yet right this moment, my left hand is tingling and if you really look closely you'll catch my left thumb twitching when I try to grasp things. The left side of my face feels like it has a horrible sunburn, yet I haven't had a sunburn in years. I have a tight, squeezing pain going around my left side. I even feel unbalanced when I walk though I have learned to compensate and hide it well. My brain fog is minimal, though my short term memory is shot. I also have weird itchy and tingly sensations that come and go over my skin randomly. This, mind you, is a good MS day for me. My bad days are much worse and my horrible days are almost unbearable. But my point is- I look perfectly normal. So if I tell someone "I have Multiple Sclerosis", they look at me, and shrug it off figuring it's no big deal because I look just fine. They have no clue what my body is going through despite it's 'normal' appearance.
Now onto the second part of my theory: No one famous enough has gotten this disease. I know that probably sounds insane, if not even a little shallow, but it's true. AIDS became well known back in the 80's because it hit so many in Hollywood, in the 90's it became almost legendary as people like Freddy Mercury died from it and Magic Johnson told the world he was HIV positive. Breast Cancer became a hot topic when more than a few actresses came out about their own battles with it, most recently Christina Applegate. Parkinson's has even come out of the closet so to speak thanks to Michael J. Fox. Now, please don't think I am faulting the activists for supporting these diseases in the least. I am simply pointing out the fact it's not until a disease becomes "trendy" to support thanks to a big name backing it that people start to learn about it. MS has Montel Williams, who has done amazing things to bring awareness to this disease. We also have Terry Garr and Richard Pryor. But really, overall, we don't have anyone that would be considered a superstar. I wouldn't wish this disease on anyone, yet I know as well as I know my own name that should a hot A list celebrity announce in People Magazine tomorrow that they have MS and that person then turns activist- suddenly you'd be seeing orange plastic wrist bands worn as often as pink and yellow.
So, this is my challenge to anyone reading this: Educate yourself, and educate at least other person in your life to what Multiple Sclerosis is. You can scroll through a number of my previous posts to find some information even. Heck, even pass out the link to my blog if you like. But until us average every day folk get the word out and start educating those around us, the majority of the population at large will remain ignorant. They say "ignorance is bliss", and it maybe blissful for the ignorant but trust me, that ignorance isn't so blissful for people like me trying to live our lives with this horrible disease.
Be well all :)
Tuesday, April 7, 2009
How can THIS possibly be a 'normal' side effect? And yes, this is from ONE injection, this isn't a cluster of sites.
I'm not trying to be mellow dramatic here, but let me tell ya, this sucker hurts. And I wish I could say this is an isolated incident but it's not. Granted yes, it is the worse one yet, but ALL my injection sites now bruise up and itch horribly. What I don't understand is how I can go from very little to no side effects for three months- to this. I did call Shared Solutions. Granted, obviously they can't see stuff like this over the phone, but they are the ones that told me bruising is normal. They also reminded me what I was told before even starting my injections- side effects can come and go at anytime, and just because you didn't have any at the beginning doesn't mean you can't develop them later in treatment.
So yeah... I'm at a loss. Other than the site reactions and joint pain (yes, that's apparently from the Copaxone too) I do seem to do alright with it. But summer is just around the corner- would anyone really want their arms and legs seen looking like this??? I mean seriously, someone is going to think either Wayne is beating me or I'm a junkie. One more thing to be self conscious about. Yay me.
*sighs*... so yeah, I'm cranky. Being itchy is on my last nerve. I'm not sure what the long term solution is for this, but I do know I'm going to have to talk to my neurologist because this sucks.
Be well all. -Mis
Saturday, April 4, 2009
I wrote in my last entry about all the bruised, sore lumps the Copaxone injections are leaving. I wish I could say it's improved, but that would be lie. In fact, I swear it's getting worse. It's bad enough that last night my son went to lay on my lap, and in the process bumped the hip I'd injected two nights before, and I winced because it's still so tender to even touch. As I type this, I'm trying not to itch the golf ball sized lump still on my arm from last night's injection and, dreading tonight's injection on my thigh because it's already got two bruised lumps on it and I'm really not keen on adding a third.
I've also been having almost constant joint pain the last couple weeks, in fact when I think about it, it started around the time the bruised lumps started. I was a little nervous something else was going on with me aside from the MS, but then I talked to my neurologist as well as did some more research on Copaxone. I think you already see where I'm going with this, right? Yup... apparently joint pain is another possible side effect of Copaxone. In fact, here is the FULL list of possible Copaxone side effects:
- Pain -- in up to 73 percent of people
- Redness -- up to 66 percent
- Infection -- up to 50 percent
- Inflammation -- up to 49 percent
- Itching -- up to 40 percent
- A lump -- up to 27 percent
- A hard or firm area -- up to 13 percent
- A welt -- up to 11 percent
- Bleeding -- up to 5 percent.
* General pain, neck pain, or back pain
* Flushing or hot flashes
* Joint pain
* Nausea, vomiting, diarrhea, or loss of appetite
* Muscle tightness
* Flu-like symptoms (such as fever or chills)
* Runny or stuffy nose
* Swollen lymph nodes
* An urgent need to urinate
* Vaginal yeast infection
* Swelling or water weight gain
* Shakiness (tremor)
* Ear pain
* A spinning sensation (vertigo)
* Painful menstrual cramps
* Migraine headaches
I've put the side-effects that I personally have in bold print. The ones that are also side-effects of Multiple Sclerosis itself I've put in blue. So here's my question: How am I supposed to know if it's the MS acting up, or the Copaxone side effects? This problem isn't strictly a DMD issue, either. (DMD = Disease Modifying Drug). The truth is, this is an issue with MANY of the common drugs used to treat the symptoms caused by MS too. Here is an example:
Two that I am also on, Baclofen and Neurontin, both say they can cause dizziness and fatigue. Granted I am lucky, I haven't noticed either symptom getting any worse since starting them than they were before taking them. But last week, my doctor put me on a drug called Topamax. I have to tell you, just reading the possible side effects was enough to give me serious hesitation before taking it. You see, I've been having constant headaches and eating Excedrine like candy as a result. My neurologist said that was not good at all- and prescribed the Topamax. But my issue was the possible side effects- which include numbness, tingling, slowed thinking, troubling concentrating, memory problems, fatigue, muscle pain and weakness. YIKES!!!! These are all issues I already have thanks to the MS, so needless to say I was really hesitant to take something that could make them even worse.
Well after much debate with Wayne on this, we decided I'd give it a try, and if I had weird side effects I'd stop immediately. Took the first dose, all seemed fine. Took the second dose... BAM! Holy crap, that was awful. I swear it was like insta-relapse in a pill. Of course I didn't actually relapse but the side effects were so severe I felt like I had. I couldn't feel the left side of my body, I couldn't think at all, could barely speak because my brain was so fogged over, was so dizzy that walking was totally out of the question, and the parts of my body I could actually feel were tingling and aching horribly. So at that point, I took a 6 hour nap in the middle of the day to try to sleep it off. Woke up, still didn't feel quite right, and went back to bed sleeping for another 10 hours until the next morning. Needless to say, I didn't take another dose of Topamax, nor would I.
Ok but now consider this logic: What if not only are we taking drugs that have side-effects rivaling those of the disease itself, what if we're then being prescribed more drugs to essentially treat the other drugs' side effects? I mean when you stop and think about it, if you are taking drugs with side effects that just so happen to be the same as the disease you have, what are you REALLY treating? Let me give you an example of I thought of:
Jane Doe has MS. She is prescribed Copaxone, which she injects once daily. Soon thereafter, she begins have issue with muscle tightness and pain, as well as migraines. Her doctor assumes these symptoms are being caused by the MS, and prescribes Baclofen for the muscle pain and Topamax for the migraine. Upon taking these drugs, she also develops painful tingling sensations which her doctor assumes is nerve pain from the MS and prescribes Neurontin. At this point, her fatigure becomes unbearable, and they then start to discuss the possibilities of a drug for that as well if it continues.
But what if that original muscle tightness and migraines weren't from the MS, they were from the Copaxone? At that point, Jane Doe is now being prescribed meds to treat Copaxone side effects. And what if the painful tingling isn't actually from MS, it's from from the Topamax? She's now being prescribed Neurontin to treat the side effect of a drug she's taking to treat the side effect of another drug! (wow if you followed that, gold star for you! LOL!) And of course if the fatigue isn't from her MS but rather the combination of drugs... you guessed... more drugs to treat drug side effects.
Are you seeing where I'm going with this? I understand that DMD's in particular are so crucial for RRMS patients, but I still have to ask myself about the quality of life we're leading if the side effects of our medications rival those of the Multiple Sclerosis itself. I don't have the answer to this, I only know if the day ever comes that I feel the DMD's are hurting me more than helping, I will have some very tough decisions to make.
Be well all! -Mis