I have spent a lot of time managing symptoms of MS but somehow have avoided that ever-present symptom of…FEAR. Do you find yourself in this train of thought often, “What was that? A leg twitch? I AM more fatigued today, could this be a relapse? They do say that a feeling of impending doom is a symptom of relapse…I definitely feel that.”
I have noticed that for the past two weeks straight, this has been my thought process upon first awakening. And I tell myself it is legitimate, because it is, but that does not change the fact that, at times, this fear of the unknown and dreaded is running my life. And the spinning of these stories inside my head actually manifest into feeling worse physically.
For so many years I have received such shoddy treatment for my chronic pain conditions that I became guarded and defensive over my symptoms. I was resistant to the idea of my mental state having anything to do with what was going on in my body because I took this as an assault on my real pain. One too many doctors had dismissed what I was going through as “being in my head” and I took a subconscious vow to advocate for myself tooth and nail.
Now in the yoga world, the realm of the Mind-Body connection, I can see that to say our minds having something to do with how our bodies feel is not to negate the reality of these bodily feelings. We can be sick in the mind and the body, and I believe that you can’t have one be well without the other.
So I am switching it up. I have told my mind that I am not going to listen to these horror-story scenarios. As my body gives me signals of pain and fatigue, I am caring for these symptoms patiently without jumping ahead for what they could mean in the long-term. Rest, rest and more rest seems to be what works best for my body and mind right now. Meditation and conscious breathing slow down my worries and let me nurture myself with ease.
It is true that I am having more MS symptoms this Spring. I do feel that I teeter back and forth on the brink of a relapse. But it is empowering to know that while MS is very powerful, so too am I. I am lucky enough to be able to rest once or twice a day, so I will do that. I am not able to practice physical yoga right now, so I will envision myself in postures and meditate instead. When I feel worse, I crave the food that makes my symptoms flare, but I will resist you sugar and will seek out the foods that I know will build my system back up. I will get through this Spring and the upcoming hot months with as much grace as I can muster, grateful for each moment to care for and love myself.
So there has been a lot of interest about how I was able to get my Bioness
covered by insurance. I thought you might be interested in seeing the
videos that my case worker used.
In the first video (where I have the cane) I'm not wearing braces or anything just walking under my own power.
In the video with the Bioness (the one where I am wearing the orange shirt), that was the first day I used it! I think there was only a few days between the videos.
These are the only videos my case worker used with the insurance company. I also wrote a letter (yes it was a sappy letter) to the head of the insurance company. Does anyone have advice for getting an electronic stimulus device approved that they could share?
I have been on aminopyridine for over three years now. As per the advice of my doctor, I obtain this drug monthly from a private pay compounding pharmacy because the FDA approved brand, Ampyra, is not covered unless you are ambulatory. Until recently, I always vacillated back-and-forth on whether or not the drug was actually improving my upper body function.
My doctor increased my dosage from 15 mg daily to 25 mg daily about three months ago and my increased upper body strength and endurance has been surprisingly significant. I am now exercising about three times a week for 60 minutes each session.
A brief background on the drug: 4- AP/ 4- aminopyridine is prescribed for people with multiple sclerosis. It is a potassium channel blocker that can improve walking and other motor functions. There is a commercially available FDA approved version of 4-AP known as Ampyra. There are a number of side effects including but not limited to seizures. I have been very fortunate and have not experienced any side effects from this medication since I began taking it.
You are probably asking yourself, how can I be so convinced that the aminopyridine is actually working. What I know is that when I have gone off the medication for short periods of time, my upper body function has suffered. Of all of the medications that I have tried over the years to help control and even improve my MS, this one remains a staple in my arsenal.
Wishing you a Happy Spring,
P.S. A bit about me...I have been diagnosed with MS for over 20 years and am currently being treated for secondary progressive MS. I am married with a beautiful little boy and until recently worked full-time using both a manual wheelchair and at times a power chair. I battled stage III breast cancer and consider myself to be a survivor. I am grateful to be a part of this community and share my experiences with you and hope that in some small way they may be useful to you.
In order to get my electronic foot drop system I was going to have to come up with $6,500, considering that I am a rich and famous teacher (I wish) that should be no sweat. Dianne the rep I was working with from Bioness told me that there was a chance insurance may cover the device if I could prove medical necessity. So I set out to see what I could do.
Rewind a few months back to the beginning of summer 2013, for some reason my insurance stopped covering my Tysabri infusions. I called the 1-800 number on the back of my insurance card to try to get to the bottom of things, after an hour of explaining things to employee after employee I was no closer to getting an answer to my problem. Frustrated and Tysabriless I did what anyone would do, I complained to a co-worker. Luckily it was the right co-worker, she informed me of an option that was available in my insurance to get a case worker to help me manage my health care.
After getting set up with my case worker Therese I explained the issue about my infusions getting cut off and she went to work. Turns out somewhere along the line someone had entered a code wrong causing my meds to become unavailable to me. There was no way I could have fixed this problem on my own; it took an hour on a conference call between 6 people to right the ship! Anyway Therese to the rescue and I was back in business.
Back to the electronic foot drop device, after demo-ing it for a short time there was no way I was going without it, it looked like I was going to be in the fundraising business. After talking with Therese my case worker she told me that I should be taking video of my PT appointments for documenting purposes. So along with Mary my PT we started to record my walking each trip I took to the office.
Therese told me to get a letter of necessity from any and all Dr.’s that I dealt with and she would present my case to the board of decision makers. I collected letters from every doctor on my team, I felt like a pest but finally I had all of the needed documentation. All that was left was for Therese to present my case to the board, this was a very nerve racking time for me, all I could do was sit around and wait for the news.
Finally I received a call from a director at the insurance company and they had agreed to cover me! “It was the videos that really did it”. I couldn’t believe it, I was covered, I never thought it would work out. “We’ll cover $80” is what I expected but it all worked out and they covered the whole amount! I owe Therese for all of the hard work she put in to get this through.
If I could do it maybe you can do it too, ask questions find out what is available through your insurance. If not through your insurance throw a fundraiser, people would rather donate to help out a friend anyway. Be your own advocate and never stop fighting.
Be a Warrior Today,
Sitting down to write a new blog, I find myself somewhat angry, or dismayed. After returning home from a very long and painful MRI, I signed onto to read new posts and information on what’s become one of my go to sites for relevant information and positive encouragement. I learn from answers to the questions posed by other patients, and I sift through that information for relevancy to my life. I may not agree with everything that is written or find anything helpful every time I sign on. However, I do love hearing everyone’s ideas and positive comments. I love hearing what’s worked and what hasn’t. We need more of the glass is half full vs the glass is half empty. My dismay comes from negative posts to facts and non biased information.
Although I have been a healthcare professional for greater than twenty years, I write this blog as a patient who is no longer able to practice my trade. I know that I not only speak for myself but for other patients as well. We turn to sites like this for updated non biased information and support. I can honestly say, that is what this site has provided. I find the site positive and supportive. It is not cluttered with advertisements or marketing material. In my twenty years of practicing as a registered nurse, I have attended many luncheons or dinners given by large corporations promoting their individual products, however, I have always listened and made my own choices regarding my care and the care of my patients. Do no harm is what I lived by in my daily routine as a nurse and as a patient. Never once has any one drug or treatment been pushed at me by my caregivers. I have always been the driver in my own care. That said, there have been times when I have relinquished those decisions to others qualified to make them for me.
There are hundreds of sites in the cyber world and so much information to sift through. This site for me has been refreshing. We aren’t going to all agree on care, treatments or ideas. What I think most of us agree on, is we need great websites like this to help all of us trying to deal with this chronic illness called MS. We need accurate information and POSITIVE encouragement. Granted it is my opinion, but this site provides that.
A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS.
After being fitted and properly calibrated I was free! Dianne my Bioness rep gave me a few pointers like “only wear it for 20 minutes at first and gradually increase each day so your muscles can get used to the electricity.” While that sounded like good advice I didn’t listen at all! After being slowed down for the past few years by a toe off, then a KFO and finally the Mamba (My huge cane) it was very liberating to walk using none of it.
Walking out the door electrified and with the ability to use both hands (since I had ditched the Mamba) I took my first steps as a free man. I walked to the trunk of my car and stuffed in all of my now useless equipment. I felt like I was in a gangster flick as I closed the lid. As I drove home my mind raced with possibilities, “I could go to the zoo…or the game…I could walk around the mall…I hate the mall, never mind.” So when I got home I got out of the car and walked two driveways away from my house and turned around and came back, totally wiped out from the trek.
It took me a few more months of physical therapy with Mary but eventually my strength came back and my left leg muscles grew to match my normal sized right leg. To this day I am still blown away by the fact that I am able to normally walk around considering what I thought was going to be the next stop on my journey through MS.
There is a brand new motorized scooter in my garage, its sweet; it has a basket a headlight and a holder for the Mamba. In the basket is the card for the contractor that measured my house for ramps so I could drive up into my house. When I took delivery of the scooter I was a wreck, it was all I could do to not break down and cry after the delivery guy took off. I sat there in my driveway on a sunny, cold November morning and thought to myself “This is really happening, this is it?”
I took it out for a spin and went around the block once and then I put it in the garage where it still sits. It was somewhere soon after that ride that I made the changes in my life that have lead me to this point in my journey, it was then that I took on a warrior mentality. By changing my diet and getting the crazy leg zapper full of alien technology I am now able to walk around the block with my family, happily kicking MS down the block as we go.
Be a Warrior Today,
During my bout with Mono I pretty much hit rock bottom as far as MS is concerned. I was soon to be piloting a wheelchair around instead of using my cane/braces combo and this wasn’t sitting well with me. It all came on too fast, I know MS is progressive and mine has been no exception but up until this point things had been taking a more leisurely pace. I wasn’t ready to be in a chair. I have a young son to look after, a wife, a house, a career and too many things to list.
So while I was feeling sorry for myself sprawled out on the couch I did a lot of soul searching, internet searching, and received many emails from friends, family and colleagues. Two things stand out as serious life changing events. Number one was an email from my mom. It was a link to Dr.Wahls’s TedX presentation on “Minding Your Mitochondrion”. Viewing this video changed everything for me, it was so simple...change your diet and give your body the energy it needs to stomp out MS. I started right away on the diet and the results have been amazing, every day I feel stronger.
The second life changing event was reading a blog on this website. It talked about electronic stimulus devices and there were links to the different types of systems, including the Bioness Foot Drop System. I hadn't heard of this before. So at my next PT appointment I brought it up to my therapist Mary and she said they had something like that in the office. The system they had in the office was a glorified version of a TENS device, not the advanced system that was offered by Bioness. So we hooked up the sticky pads to my gimpy failure of a left leg and turned on the juice…nothing, the batteries were dead. After changing out the batteries, the required electricity now became available, so Mary pushed the button and...I felt a little twinge in my foot. Not bad, since I hadn’t felt anything down there since 2010, but not quite enough to get me going anywhere. So Mary cranked up the Juice and voila my foot turned on! It was uncomfortable to say the least. I think Mary liked zapping me too, but it was working.
So now I’m walking/gimping around the therapy office tethered to my mini therapist (I’m 6’6” and she’s about 5’2”) by an electrical cord with a button that she has to push every time the machine needs to zap me. I still had my cane but no braces at this point. The machine was working pretty well but it wasn’t meant for an all-day kind of event. Mary and I talked about the Bioness system and decided it couldn’t hurt to contact the sales rep in the area and see what they thought.
After contacting the rep Dianne, we set up an appointment to fit the system and see if it would work for me. Dianne met me at my next PT session and talked with Mary and I before fitting the device to my leg. I couldn’t take the excitement. It was killing me after watching videos online of MSers walking with their devices. I was sure I’d get up and run out of the place! Dianne put the cuff around my knee, plugged in a little control box to a bigger computerized head unit and turned on my leg…Seriously, this was crazy, but my entire foot went from hanging there doing nothing to full of energy, one of the craziest things I have ever seen. Not only did my foot turn on but my calf flexed and my knee felt like it “pulled together”.
Now I’m powered up and I take a few steps away from the table and go for it, I walked around the office once and stopped for adjustments and to drop off my cane. It was working, I couldn’t believe that there was a way to turn my leg back on and I was wearing it! Dianne told me that we could talk to insurance about getting it covered but it was a long shot considering the $6,500 price tag, but she would work on a loaner system for me to try out.
In only a few days’ time I had gone from lying on the couch contemplating life in a powered chair to walking around under my own (limited) power. I couldn’t believe this was all happening to me, for the first time in years I had hope. MS was not taking me down not without a serious fight.
Be a Warrior Today,
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.
Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.