Multiple sclerosis is a progressive disease. Progressing is what it does and unpredictably at that. The goal of treatment is to slow the progression down or to halt it entirely. But measuring progression is not as easy as it may sound. It takes repeated evaluations over a large period of time to document new levels of disability. It takes an even larger period of time to come to the conclusion that a certain level of disability has become permanent.
As MS symptoms can fluctuate day-to-day and visit-to-visit, it can be difficult to establish a baseline against which to try to judge how you are feeling and functioning. This is one reason why newly-diagnosed patients typically have more office visits during their first year than patients who have been diagnosed for years.
Whenever we are in the midst of a relapse (for those of us with relapsing-remitting MS), we may feel certain that our disease is getting worse. But given time, the majority of our relapse symptoms will indeed return to “normal.”
But what do you do when you look back over time and come to the conclusion that your “normal” has shifted and isn't going back to what it once was? I have experienced this situation recently. There were many visits where the neuro/nurse would say, “I think that we've just caught you on a down day.” Fortunately for me, she has an objective way to document how specific symptoms and functions are behaving on THAT particular day and incorporate the results with my self-reported status of the previous few months.
Read this post in its entirety:
Talking to Your Doctor about MS Progression
Sunday, December 4, 2011
Tuesday, November 29, 2011
Tapering Steroids after Solumedrol
As you know, I have had a recent MS relapse. This one wasn’t one which I just wanted to “wait it out” for. I’ve done that with very minor bumps/relapses along the road during the recent years. In fact since switching drug treatment two years ago, my MS relapses had been more subtle and my MS has been more stable.
After this round of steroids (four days IV total and two days already high-dose orals), I needed to make a decision. Whenever you have MS, it seems that there are always decisions to be made. This one - to use an oral steroid taper or not.
The general consensus is that if a patient receives five days of IVSM, then an oral taper is highly recommended. The drop-off of steroids is drastic after you’ve just had the equivalency of 5000mg of prednisone pumped into your body, then nothing. But when a patient takes only three days of IVSM, then the taper may be skipped if desired by patient and doctor.
Thursday morning, Thanksgiving morning, I slept in a little later than anticipated. After getting up early the previous three mornings to go to the neurology clinic for steroid infusions, I was glad to not have to set the alarm. I knew I would be awake early enough anyways because of the steroids, so it seemed important to me to start off the day taking care of myself and to let my body do what it needed to naturally. No alarm clock.
I also needed to decide whether to take some Decadron or not (Decadron is my oral steroid of choice as prednisone and I don’t get along too well). I was right in between the two scenarios of whether to taper or not, but actually having had six days of steroids already (with the oral float over the weekend). I was debating with myself.
Read this post in its entirety:
To Taper or Not To Taper: Plummeting Steroid Levels
After this round of steroids (four days IV total and two days already high-dose orals), I needed to make a decision. Whenever you have MS, it seems that there are always decisions to be made. This one - to use an oral steroid taper or not.
The general consensus is that if a patient receives five days of IVSM, then an oral taper is highly recommended. The drop-off of steroids is drastic after you’ve just had the equivalency of 5000mg of prednisone pumped into your body, then nothing. But when a patient takes only three days of IVSM, then the taper may be skipped if desired by patient and doctor.
Thursday morning, Thanksgiving morning, I slept in a little later than anticipated. After getting up early the previous three mornings to go to the neurology clinic for steroid infusions, I was glad to not have to set the alarm. I knew I would be awake early enough anyways because of the steroids, so it seemed important to me to start off the day taking care of myself and to let my body do what it needed to naturally. No alarm clock.
I also needed to decide whether to take some Decadron or not (Decadron is my oral steroid of choice as prednisone and I don’t get along too well). I was right in between the two scenarios of whether to taper or not, but actually having had six days of steroids already (with the oral float over the weekend). I was debating with myself.
Read this post in its entirety:
To Taper or Not To Taper: Plummeting Steroid Levels
Sunday, November 27, 2011
Having a Relapse? When to Call the Doctor?
As a patient living with MS, knowing when you are experiencing a relapse is not such an easy task. I used to think that the objective definition - new or worsening symptoms present for more than 24 hours - was a clear enough definition to inform me if my MS was relapsing or not. I was mistaken.
During the first few years of living with MS, relapses did seem to be more clear-cut. It was apparent when something new occurred or when previous symptoms got worse and I would call the nurse. Each time, she scheduled me to see the doctor the next morning and I knew what was coming. I would be sent down the hall to the infusion suite to begin a new round of intravenous steroids.
By the time I called the office, I had been experiencing the symptoms for a number of days. It was undeniable that they were not going to go away on their own. The new and/or worsening symptoms needed the help of steroids to get gone. There was only one thing which would have prevented the need for steroids and that was if a urinary tract infection (UTI) were present. So providing a quick urine sample to be tested was warranted. By the way, only once did I have a UTI when I thought I was having a relapse.
Read this post in its entirety:
Identifying the MS Relapse: When Should I Call the Doctor?
During the first few years of living with MS, relapses did seem to be more clear-cut. It was apparent when something new occurred or when previous symptoms got worse and I would call the nurse. Each time, she scheduled me to see the doctor the next morning and I knew what was coming. I would be sent down the hall to the infusion suite to begin a new round of intravenous steroids.
By the time I called the office, I had been experiencing the symptoms for a number of days. It was undeniable that they were not going to go away on their own. The new and/or worsening symptoms needed the help of steroids to get gone. There was only one thing which would have prevented the need for steroids and that was if a urinary tract infection (UTI) were present. So providing a quick urine sample to be tested was warranted. By the way, only once did I have a UTI when I thought I was having a relapse.
Read this post in its entirety:
Identifying the MS Relapse: When Should I Call the Doctor?
Thursday, November 24, 2011
Carnival of MS Bloggers #102
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Thanksgiving, Gratitude, and Faith
by LauraX of Shine the Divine
It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.
by Judy of Peace Be With You
A loved one’s presence
provides prized companionship
and valued support.
Buoyed by precious love,
one’s spirit takes flight and soars
past stressful moments.
Though hard times exist,
a sense of kinship prevails.
One is not alone.
by Mary of Travelogue for the Universe
Wait a minute,
just a slice of time,
does it look like a pickle slice?
Wait a minute,
catch your breath,
can you hold it,
in your hands?
Wait a minute,
did you ever hear,
"Wait a minute,"
and it really meant to
"stop?"
Wait a minute,
60 seconds,
how far does Earth travel
in that time?
Wait a minute,
adult time out,
wait a sec is
another way to say,
Wait a minute,
or a second,
take a moment,
for a change.
by Michael from Perspective Is Everything
I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.
Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.
What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”
These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.
Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.
1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)
These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.
Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.
Participate. Make a difference. Live a life that matters.
A Problem of Faith
by Kim of Doc, It Hurts When I Do This...
by Kim of Doc, It Hurts When I Do This...
Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.
Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.
The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.
One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.
But this is not true.
The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.
In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.
Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.
Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.
The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.
When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?
The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.
The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.
The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.
Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.
The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.
The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?
This concludes the 102nd edition of the Carnival. Thank you for making this such a wonderful community online.
The next Carnival of MS Bloggers will be hosted here on December 8, 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, December 6, 2011.
Thank you.
Tuesday, November 22, 2011
My Recent Relapse
Living in Denial
In the past week or more, I have been feeling not my best. Each day symptoms would begin to flare and I would hope to wake up the next morning feeling better. One such evening, it was my eyes which were out of whack. The color pink was beginning to fade, but the next morning things were back to normal. There was no pain to report but one eye did appear darker than the other. (Denial.)
More annoyingly, spasticity has been increasing behind my left leg. The muscles have felt knotted and trying to stretch them out has been painful. Baclofen had returned to a twice a day medication with modest benefit. For me, when spasticity increases, my knees begin to hurt from the increased pull on them. Living with joint pain anyways, that is one which takes me a while to associate in a timely fashion. (Denial.)
I started having more difficulty getting up from a seated position and walking up the stairs. I didn’t come up with a good excuse for that but just thought my symptoms were “acting up.” But Thursday’s yoga class was very difficult for me. My legs tried to convince me that I weighed two tons, but I told them back that there were sorely mistaken. Some of the stretches focusing on the legs almost made me want to tear up. (Less denial.)
Read this post in its entirety:
Denying Denial: Admitting to an MS Relapse and Taking Action
In the past week or more, I have been feeling not my best. Each day symptoms would begin to flare and I would hope to wake up the next morning feeling better. One such evening, it was my eyes which were out of whack. The color pink was beginning to fade, but the next morning things were back to normal. There was no pain to report but one eye did appear darker than the other. (Denial.)
More annoyingly, spasticity has been increasing behind my left leg. The muscles have felt knotted and trying to stretch them out has been painful. Baclofen had returned to a twice a day medication with modest benefit. For me, when spasticity increases, my knees begin to hurt from the increased pull on them. Living with joint pain anyways, that is one which takes me a while to associate in a timely fashion. (Denial.)
I started having more difficulty getting up from a seated position and walking up the stairs. I didn’t come up with a good excuse for that but just thought my symptoms were “acting up.” But Thursday’s yoga class was very difficult for me. My legs tried to convince me that I weighed two tons, but I told them back that there were sorely mistaken. Some of the stretches focusing on the legs almost made me want to tear up. (Less denial.)
Read this post in its entirety:
Denying Denial: Admitting to an MS Relapse and Taking Action
Monday, November 21, 2011
Blogger Missing in Action
Wow, where have I been?! It's been 2.5 weeks since I posted on Brass and Ivory. I don't really have much excuse except that I haven't been motivated to get stuff up. I may have to "go back in time" and take care of that big gap. LOL.
One thing which has been lacking is motivation on my part. After the new engagement, I have actually spent a little bit of time researching wedding ideas online. Then I discovered some new computer games which have been fun to conquer.
And during the past week, my MS decided to make a definite presence in my legs. I'm actually having a relapse, the first real one with no question of steroid need in two years. I started IVSM on Friday and took oral steroids over the weekend. Then I'm continuing with 3 additional days of IVSM this week before Thanksgiving.
Already improvement is evident so treatment is totally worth it. However, I am trying to keep my mood level as even very kind helpfulness and concern creates a deep need for isolation inside. It's like the moodiness doesn't want to smile, even if I might. At least I know that this will be over soon and I'll have strong legs once more.
More posts to come soon.
Lisa
One thing which has been lacking is motivation on my part. After the new engagement, I have actually spent a little bit of time researching wedding ideas online. Then I discovered some new computer games which have been fun to conquer.
And during the past week, my MS decided to make a definite presence in my legs. I'm actually having a relapse, the first real one with no question of steroid need in two years. I started IVSM on Friday and took oral steroids over the weekend. Then I'm continuing with 3 additional days of IVSM this week before Thanksgiving.
Already improvement is evident so treatment is totally worth it. However, I am trying to keep my mood level as even very kind helpfulness and concern creates a deep need for isolation inside. It's like the moodiness doesn't want to smile, even if I might. At least I know that this will be over soon and I'll have strong legs once more.
More posts to come soon.
Lisa
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