I received a video a couple of weeks ago showing a wheelchair bound woman using a pair of robotic legs to walk.
Someone close to me sent me this video and in her mind she had just found a way for me to walk again. I know this person cares about me a lot but I wish her focus was on getting me better and not just getting me walking. My battle with MS is so much more than just the mobility challenges. My upper body strength and core weakness wouldn't make me a good candidate for this technology. I'm not upset because I can't use this technology. I'm frustrated because some of the people I'm close to don't understand what MS is and that it can affect so many things!
I have a deep appreciation for the way that technology has kept me independent for so long. I don't know what I would do without Dragon, my standing wheelchair, or my Bluetooth just to name a few. The future of technology seems limitless. I can't lie, it brings a smile to my face to see the woman in the video get out of her wheelchair, strap on robotic legs and walk. It's great that there is a segment of the wheelchair population that can benefit from this technology but what I really want is a cure to MS!
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.
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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.