Thursday, May 31, 2012
MS Fatigue
CNN is featuring MS in a lot of health articles lately - good to see a major news outlet keeping MS in the forefront. Here's a link to their articles about a common MS issue, fatigue: Fighting the Fatigue of MS.
Wednesday, May 30, 2012
World MS Day
Today is World MS Day. The NC chapters of the National Multiple Sclerosis Society are honoring the occasion with an advocacy day. Today is a day to contact elected officials and be one of the 1000 Faces of MS, personalizing what it means to live with or be affected by MS.
Here's my story:
Here's my story:
I am a married mother of 2 small boys who was laid off from work earlier this year. I've been fortunate enough to have insurance that covered all of the expenses associated with MS, such as MRIs, frequent medical appointments, IV infusions, and numerous medicines. But once my COBRA runs out, I'll be faced with the horrible dilemma of not being able to afford insurance, or not being able to get the treatment I need to function. Trying to find work with MS is a struggle, since some people equate trouble walking with trouble getting any job done during the day (even a sedentary one). This face of MS knows I have a lot to contribute, as a mom and an IT professional with a master's degree and multiple certifications. Like so many people with MS, I don't want a handout - I just want a chance. People with MS can still live and thrive, if they have the access to the medical care and medicines. During the 10 years since my diagnosis, there has been so much progress in treatment options...but there's still so far to go. MS strikes people in the prime of life, when they still have so much to offer. Supporting MS research and treatment options is an investment in a vital part of the population that has a lot to contribute. I am one of the "1000 Faces of MS" and this is what living with MS means me.
Tuesday, May 29, 2012
Mobility Devices
Walking can be a huge challenge for people with MS, courtesy of balance issues, spasticity, strength problems, and fatigue. CNN has a slideshow on some of the mobility devices available for MS patients: Stepping Through Multiple Sclerosis.
I've used a few of these.
- The foot up was useful for foot drop issues, but it complicated those moments when I needed to let my foot down, like going down the stairs.
- I've relied on a cane quite a bit. When I realized I'd need a cane, I told my husband I wanted a cool one. Not only did he find me a beautiful one, but he got me a collapsible cane so I could keep it with me.
- I used an ECV (electric conveyance vehicle) when my family went to Disney World. Without it, I would not have been able to enjoy the vacation with my family. It was surprisingly easy to navigate, and I got to spend a lot more time in the parks. There's no way I could have handled all of that walking.
I've used a few of these.
- The foot up was useful for foot drop issues, but it complicated those moments when I needed to let my foot down, like going down the stairs.
- I've relied on a cane quite a bit. When I realized I'd need a cane, I told my husband I wanted a cool one. Not only did he find me a beautiful one, but he got me a collapsible cane so I could keep it with me.
- I used an ECV (electric conveyance vehicle) when my family went to Disney World. Without it, I would not have been able to enjoy the vacation with my family. It was surprisingly easy to navigate, and I got to spend a lot more time in the parks. There's no way I could have handled all of that walking.
Sunday, May 27, 2012
MS Symptoms Article
Here's a good slideshow from Health Central summarizing more common MS symptoms: 10 possible MS symptoms.
Saturday, May 26, 2012
Into the Tube
MRI. One of my least favorite acronym when it comes to MS. Besides, of course, the acronym MS itself.
It would be more accurate to say I have mixed feelings about MRIs. Since I'm claustrophobic, the idea of getting into a loud, confining tube is not the way I'd choose to spend my time. On the other hand, the MRI is such an effective tool for neurologists in monitoring MS activity that I've just had to suck it up and deal with my fears.
MRIs can provide useful information both about your current situation and your progression with the disease. The MRI can show hot spots of activity that explain current or recent exacerbations. For example, when I had a bout with double vision, my neurologist was able to see the lesion that had caused it.
For those of us on Tysabri, an MRI can provide even more valuable information. My neurologist explained that sometimes MRIs can show early signs of PML. The sooner PML can be detected, the better the chance of being able to treat it.
Comparing MRIs over time provides a lot of valuable information to your neurologist. By comparing the most recent MRI to previous MRIs, neurologists can see whether there's been any changes. If there are no changes, then that tells the neurologist that your current course of treatment is effective. If there are changes on the MRI, then the neurologist can adjust treatment options accordingly.
So, how do you get through an MRI?
This is NOT the time to be brave. If you have the slightest suspicion you are claustrophobic, tell your neurologist. You could be prescribed a relaxant, or you could even be given a valium IV during the MRI. If you get the meds you need to get through the MRI, it's better for everyone - you'll get through it faster, and the technician has a much better chance of getting good images. Trust yourself and don't listen to others. Before my first MRI, a family member told me I was being a diva, so I tried a medicine-free MRI. I had to be pulled out of the tube sobbing. Instead of getting the images, I had to reschedule for another date, which meant I wasted everyone's time. On the plus side, I did enjoy saying "I told you so" to the family member who had questioned me. Small benefit, I know. Ever since, I've had my neurologist prescribe IV valium, and the MRI goes smoothly for everyone.
If you do get IV valium, you need to have a driver, and you're not supposed to drive or make any important decisions that day. The receptionist told my husband he could take advantage of me that day. When she realized how that sounded, she reminded him that she meant that for legal matters only. He grinned.
You'll also be given a questionnaire to determine whether there's anything that could interfere with giving you an MRI (ex. if you've been shot). Some MRI facilites have music (and in some cases videos) to help distract you during the procedure. You'll change into scrubs and head into the room where the MRI machine is located. At this point, I introduce myself to the machine by sticking out my tongue at it, but that's not required. Then the technicians will get you set up for going into the tube. If your doctor has prescribed valium, a doctor will come in and adminster that as well. Before you go into the tube, they'll hand you a panic button that you can push if you need to come out of the machine before the procedure is complete. Trust me, the button works - you don't have to test it for yourself.
You may hear the doctor and technician refer to contrast or dye. In those situations, the technician will get a series of images, then inject some dye into your IV before taking the images again. This dye will provide contrast, which could make it easier for anyone reading the MRI to detect lesions.
After your MRI, you may be given a CD with a copy of the MRI images. Store this CD in a secure place. If you go to another doctor or a different MRI facility, you'll be able to provide those treating you with some valuable history to help them treat you better.
It would be more accurate to say I have mixed feelings about MRIs. Since I'm claustrophobic, the idea of getting into a loud, confining tube is not the way I'd choose to spend my time. On the other hand, the MRI is such an effective tool for neurologists in monitoring MS activity that I've just had to suck it up and deal with my fears.
MRIs can provide useful information both about your current situation and your progression with the disease. The MRI can show hot spots of activity that explain current or recent exacerbations. For example, when I had a bout with double vision, my neurologist was able to see the lesion that had caused it.
For those of us on Tysabri, an MRI can provide even more valuable information. My neurologist explained that sometimes MRIs can show early signs of PML. The sooner PML can be detected, the better the chance of being able to treat it.
Comparing MRIs over time provides a lot of valuable information to your neurologist. By comparing the most recent MRI to previous MRIs, neurologists can see whether there's been any changes. If there are no changes, then that tells the neurologist that your current course of treatment is effective. If there are changes on the MRI, then the neurologist can adjust treatment options accordingly.
So, how do you get through an MRI?
This is NOT the time to be brave. If you have the slightest suspicion you are claustrophobic, tell your neurologist. You could be prescribed a relaxant, or you could even be given a valium IV during the MRI. If you get the meds you need to get through the MRI, it's better for everyone - you'll get through it faster, and the technician has a much better chance of getting good images. Trust yourself and don't listen to others. Before my first MRI, a family member told me I was being a diva, so I tried a medicine-free MRI. I had to be pulled out of the tube sobbing. Instead of getting the images, I had to reschedule for another date, which meant I wasted everyone's time. On the plus side, I did enjoy saying "I told you so" to the family member who had questioned me. Small benefit, I know. Ever since, I've had my neurologist prescribe IV valium, and the MRI goes smoothly for everyone.
If you do get IV valium, you need to have a driver, and you're not supposed to drive or make any important decisions that day. The receptionist told my husband he could take advantage of me that day. When she realized how that sounded, she reminded him that she meant that for legal matters only. He grinned.
You'll also be given a questionnaire to determine whether there's anything that could interfere with giving you an MRI (ex. if you've been shot). Some MRI facilites have music (and in some cases videos) to help distract you during the procedure. You'll change into scrubs and head into the room where the MRI machine is located. At this point, I introduce myself to the machine by sticking out my tongue at it, but that's not required. Then the technicians will get you set up for going into the tube. If your doctor has prescribed valium, a doctor will come in and adminster that as well. Before you go into the tube, they'll hand you a panic button that you can push if you need to come out of the machine before the procedure is complete. Trust me, the button works - you don't have to test it for yourself.
You may hear the doctor and technician refer to contrast or dye. In those situations, the technician will get a series of images, then inject some dye into your IV before taking the images again. This dye will provide contrast, which could make it easier for anyone reading the MRI to detect lesions.
After your MRI, you may be given a CD with a copy of the MRI images. Store this CD in a secure place. If you go to another doctor or a different MRI facility, you'll be able to provide those treating you with some valuable history to help them treat you better.
Tuesday, May 15, 2012
P-M-L J-C-V M-O-U-S-E
I am JCV positive.
For most people, that doesn't mean anything. But people on Tysabri, or those who know people taking Tysabri, will probably understand why I know or care about JCV.
Let me backtrack by explaining a few terms....
Tysabri - It's an MS drug administered every 4 weeks by IV infusion. Unlike the earlier disease-modifying drugs, Tysabri is not self-administered, so no more shots at home. You go to an infusion center every 4 weeks and sit in a comfy chair with an IV in your arm. Then you stick around for another hour so the nurses can make sure you don't show any allergic reactions to the drug. That's it. You don't have to think about medicine for another 4 weeks. No more Sharps containers, no more alcohol wipes, no more psyching yourself up at home to stick a needle into your own body on a regular basis. During clinical trials, patients showed a significant reduction in relapses when taking Tysabri, and the drug was hailed as a huge positive step in the treatment of MS.
PML - PML stands for progressive multifocal leukoencephalopathy, a rare brain disorder that can kill or cause serious disability. Unfortunately, one of the risks of taking Tysabri is an increased risk of developing PML. That's a big reason why Tysabri is not usually the first drug of choice for MS patients and is usually recommended only after other disease-modifying drugs don't produce satisfying results. This risk is why Tysabri is one of those drugs with a black box warning detailing the potential dangers of taking the drug. It's also why patients on Tysabri are closely monitored and can only have their infusions in IV centers participating in the TOUCH program which oversees the administration of the drug.
JCV - JCV is the virus that causes PML, and it's a virus to which a large percentage of the population (I've seen numbers ranging from 50-90%) have been exposed. People taking Tysabri will be tested to see if they have the virus in their systems. If not, then they don't have to worry about developing PML. If they do, then they are at risk for developing PML. The risk increases further the longer you take Tysabri and whether you took certain immune-suppressing drugs before taking MS medications.
Given the high percentage of the population that has been exposed to JCV, I was not surprised when my blood test showed that I had been exposed to the virus. My neurologist and I talked about it during my last appointment, and I'm sure it won't be the last discussion we have on the subject. Typically, JCV-positive patients are at greater risk after taking Tysabri for 2 years, and I've only been taking it for 7 months. We agreed that for now, it's OK for me to still be getting the infusions, but that I need to speak up IMMEDIATELY if I notice any new or worsening symptoms. It used to be thought that there was no cure or treatment for PML, but when symptoms are detected early, stopping the Tysabri and doing a plasma exchange to flush out any remaining drug.
My neurologist also told me that brain MRIs can assist in the early detection of PML, so it was back in the tube for me. Since I'm claustrophobic, I wish I could avoid MRI machines, but when it comes to MS, neurologists get so much information about the disease and its progression that I have to just suck it up, take my IV valium, stick my tongue out at the MRI machine before going in, and begrudgingly accept the value that the MRIs have on my continued treatment. I can't let my fear get in the way of my treatment.
For most people, that doesn't mean anything. But people on Tysabri, or those who know people taking Tysabri, will probably understand why I know or care about JCV.
Let me backtrack by explaining a few terms....
Tysabri - It's an MS drug administered every 4 weeks by IV infusion. Unlike the earlier disease-modifying drugs, Tysabri is not self-administered, so no more shots at home. You go to an infusion center every 4 weeks and sit in a comfy chair with an IV in your arm. Then you stick around for another hour so the nurses can make sure you don't show any allergic reactions to the drug. That's it. You don't have to think about medicine for another 4 weeks. No more Sharps containers, no more alcohol wipes, no more psyching yourself up at home to stick a needle into your own body on a regular basis. During clinical trials, patients showed a significant reduction in relapses when taking Tysabri, and the drug was hailed as a huge positive step in the treatment of MS.
PML - PML stands for progressive multifocal leukoencephalopathy, a rare brain disorder that can kill or cause serious disability. Unfortunately, one of the risks of taking Tysabri is an increased risk of developing PML. That's a big reason why Tysabri is not usually the first drug of choice for MS patients and is usually recommended only after other disease-modifying drugs don't produce satisfying results. This risk is why Tysabri is one of those drugs with a black box warning detailing the potential dangers of taking the drug. It's also why patients on Tysabri are closely monitored and can only have their infusions in IV centers participating in the TOUCH program which oversees the administration of the drug.
JCV - JCV is the virus that causes PML, and it's a virus to which a large percentage of the population (I've seen numbers ranging from 50-90%) have been exposed. People taking Tysabri will be tested to see if they have the virus in their systems. If not, then they don't have to worry about developing PML. If they do, then they are at risk for developing PML. The risk increases further the longer you take Tysabri and whether you took certain immune-suppressing drugs before taking MS medications.
Given the high percentage of the population that has been exposed to JCV, I was not surprised when my blood test showed that I had been exposed to the virus. My neurologist and I talked about it during my last appointment, and I'm sure it won't be the last discussion we have on the subject. Typically, JCV-positive patients are at greater risk after taking Tysabri for 2 years, and I've only been taking it for 7 months. We agreed that for now, it's OK for me to still be getting the infusions, but that I need to speak up IMMEDIATELY if I notice any new or worsening symptoms. It used to be thought that there was no cure or treatment for PML, but when symptoms are detected early, stopping the Tysabri and doing a plasma exchange to flush out any remaining drug.
My neurologist also told me that brain MRIs can assist in the early detection of PML, so it was back in the tube for me. Since I'm claustrophobic, I wish I could avoid MRI machines, but when it comes to MS, neurologists get so much information about the disease and its progression that I have to just suck it up, take my IV valium, stick my tongue out at the MRI machine before going in, and begrudgingly accept the value that the MRIs have on my continued treatment. I can't let my fear get in the way of my treatment.
Tuesday, May 08, 2012
Our Non-MS Lives
Primary elections took place today here in North Carolina. After I left the polling place, it hit me how I did something important that had nothing to do with having MS. Yes, my decisions may have been influenced by having MS, but I was doing something important for all adults, not just those with MS.
One of the pitfalls of having MS is letting it take too much of a central role in my life. Yes, I have MS, but there are so many other aspects to me too. I can't let my disease completely overshadow the rest of my life and responsibilities.
Managing my health - One of the biggest mistakes I've made - one that almost cost me my life - is ignoring health issues other than MS. I ended up in the hospital earlier this year because I had mistakenly attributed my leg problems to spasticity. Yes, that's part of the problem, but I was ignoring the symptoms of a life-threatening blood clot in my leg because I wasn't thinking outside of the MS box. There's a reason that MS patients are advised to keep a close relationship with doctors other than their neurologists - we're not immune to other health issues because we've got MS. I've got to make sure I keep up with all of my medical appointments and make sure I don't get so focused in on treating my MS that I forget to handle the other health issues that come my way.
Citizenship - I voted today. I can't ignore my responsibilities as a citizen of this planet just because I have MS. Sure, I may need to use my car more than the average person because of my disease, but that doesn't mean I have to drain all of the earth's resources. I can still reduce, reuse, and recycle.
Stewardship - OK, there are some volunteer activities I used to do that I can no longer do. My days of walking a 5K to raise money are over. And I'm not the right person to call up when it's time to chaperone a field trip. But there are still ways I can serve my community. Ushering a church service doesn't work well for me, but I am part of the prayer ministry. I'm not comfortable committing to regular committee participation, but the head of our health ministry knows that I am a resource. I'm not the most recently diagnosed person in my congregation, and I'm willing to answer questions, offer support, listen to venting...whatever's needed. I let that slip when I went to the hospital, so now I'm going to prioritize these relationhips again.
I've also been learning about online opportunities to support causes that only require clicks on the computer. On Facebook, I virtually volunteer at animal shelters and foster dogs. After earning a certain amount of points, then advertisers contribute food to animal shelters. I also go the The Hunger Site, where advertisers donate to hunger organizers if I click daily. From that site, I can also get to their other sites to support literacy, autism, veterans, and a number of other causes.
I've been told over and over that I'm more than my MS. These are just a few of the ways that it's obvious to me.
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