MS news notes: Dalfampridine, Neural Sleeve, vitamin D

Columnist Ed Tobias comments on the week's top MS news

Ed Tobias avatar

by Ed Tobias |

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Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at what’s been happening:

Dalfampridine side effects

The side effects that might occur if you use dalfampridine (sold under the brand name Ampyra) seem to be about the same as those listed on the medication’s label, according to research discussed in the MS News Today story “Study examines real-world side effects linked to dalfampridine.” But the study isn’t conclusive about whether those side effects, which were reported to the U.S. Food and Drug Administration’s Adverse Event Reporting System, were caused by dalfampridine or by the patients’ MS.

I used dalfampridine — sometimes called the “walking drug” — for a number of years, and I think it improved my walking speed a bit. I can’t remember any side effects, but eventually, the medication’s benefits decreased and it no longer seemed to be worth its cost, so I stopped using it.

According to the story, “Common side effects included urinary tract infection (UTI), dizziness and MS worsening, consistent with the therapy’s known profile. However, previously unreported adverse events, such as spinal cord injury, also were identified.”

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Neural Sleeve named a Time ‘best invention’

The Neural Sleeve is a fairly new product of AI-powered bionic clothing that is designed to help people like me who have foot drop due to MS or other medical conditions. The device is also a functional electrical stimulator. I sometimes wear a similar device on my left leg to help me lift my foot.

As the story “Neural Sleeve to aid walking with MS makes Time’s best inventions list” details, the device is one of 200 inventions the magazine’s editors consider “groundbreaking, … changing how we live, work, play, and think about what’s possible.”

I’ve recently been offered the opportunity to give the Neural Sleeve a try. Naturally, I plan to write about it in a future “MS Wire” column.

The vitamin D-MS connection

The story “Low vitamin D blood levels tied to poorer cognition, greater disability” reports on a study that sampled the blood of 181 people with MS.

An adequate blood level of vitamin D is defined as 31 nanograms per milliliter or higher. But in this group, the study found that the mean vitamin D level was 24.2 ng/mL. Just over 35% of the patients had a level ranging from 20 to 30 ng/mL, which is considered insufficient. Just over 39% had a level below 20 ng/mL, which is considered deficient.

The researchers report that tests given to these patients on the day of their blood draws showed that “vitamin D is associated with both motor and cognitive disability in MS.” They also noted that “in MS, vitamin D levels are associated with attention/information processing speed … and with working and verbal memory.”

I’ve taken a vitamin D supplement for years, on the advice of my neurologist. Does it help? I don’t know, but it’s not expensive and I doubt it does any harm at the level that I use it.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Debbie O'Rourke avatar

Debbie O'Rourke

Best of luck with the Neural Sleeve Mr, Tobias. It is great you are getting the opportunity to try it. I have been reading up on it a lot lately. Look forward to hearing how you get on using it.

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Ed Tobias avatar

Ed Tobias

And I'm looking forward to trying it. It'll probably be several weeks before all of this comes together, so stay tuned!

Ed

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karen dolan avatar

karen dolan

My experience is that Ampyra is a miracle drug! I've been on it since it came on the US market in 2010. I have significant disability, though I can walk short distances with a walker and can go up stairs if there are railings on both sides. The effect absolutely has NOT waned a bit in nearly 14 years. If I forget to take it, I can barely move. So my experiences is not at all the same as the author's. I also tried the cionic sleeve in August and September and that absolutely did not work for me as I have 100% foot drop. However if you don't have foot drop (and are not senstivie to latex) it may work very well for you. My Walkaide totally corrects my footdrop while the Cionic barely moved my footdrop. I have taken 3000-5000 ius of Vitamin D for decades and I feel that it functions to keep me energetic and healthy, though I don't have any scientific evidence of that nor of what it does for MS

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Ed Tobias avatar

Ed Tobias

Hi Karen -

Thanks for your comments on all three topics...a true triple play.

I'm really glad that Amprya helped you so much, glad that the Walkaide helps, sorry that the sleeve doesn't, and glad again that the vitamin D helps. I'm very interested to see how the sleeve works for me, as my drop is severe and the Bioness, which used to help a lot, now only helps a little.

Ed

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Michael Drohan avatar

Michael Drohan

Very confused about the delfampartine side effects, and they mostly seem just par for the course with MS and the patient profile who takes it. I've been taking it consistently for about 15 years now. I use a wheelchair, but I'm a little hesitant to get off of it, as a previously helped me feel a little more "centered," even after its effect on my limited walking was negligible. I'm meeting with my neurologist in 2 weeks anyways, and I think I may broach phasing it out, I just don't want to do that too fast, have unwanted side effects, or have my body react in unanticipated ways when being without it.

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Ed Tobias avatar

Ed Tobias

Hi Michael -

We're all different, but I can tell you that I never noticed any side effects, nor did I notice any problems when I stopped using it. But, it would certainly be advisable to discuss your concerns with your neuro.

Ed

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Matthew Klein avatar

Matthew Klein

The neural sleeve, like every single electronic aide, has absolutely no insurer jumping to pay. These are all conveniently still considered experimental in nature. This is despite the fact that in many cases, the data show a definite advantage. Basically those with money, mostly who work and therefor don't need this device, can afford it. Those who are disabled and require it, represent the lion's share of the unemployed. It's a lose lose for most that really are in need. Much the same for the Bioness L300 at over $6K per leg. WHO not working, can afford these things?

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Joe Pierce avatar

Joe Pierce

Interesting. Thanks Matthew!

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Ed Tobias avatar

Ed Tobias

Hi Matthew,

You're absolutely right. Although I have heard of at least one case where someone has managed to get his insurance to pay for the Bioness, it's certainly not the case for the vast majority of folks. (I understand the neural sleeve is only about 1/3 the cost of the Bioness, but it's still out of reach of many.)

From what I know, commercial insurance won't pay for it for MS patients because Medicare/Medicaid won't pay for it and that's because there haven't been clinical trials of the device for people with MS. I've been told insurance HAS paid for the Bioness for people with spinal injuries that result in similar foot drop symptoms.

So, the question is what's keeping a clinical trial from being done? As a layman, I have no idea.

Ed

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KA avatar

KA

My doctor found my Vit D level was low, I live in a climate where the sun is at a low level about 6 months out of the year and I don't tolerate the heat well so I don't go outside much in the summer so it makes sense that it was low. I've been taking Vit D supplements for a couple of years. I don't know if it helps but I'm 66 yrs old and still functioning quit well as a nurse so that says something.

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Ed Tobias avatar

Ed Tobias

Hi KA,

Still functioning well as a nurse says more than something, it says a lot! More power to you and your supplements.

Ed

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Mary E. Marros avatar

Mary E. Marros

I use a power wheelchair for about 9 yezrs now.full time. Been taking dalfampridine/Ampyra for a long time. If i forget i have a really hard time moving.. Even though i use a wheelchatr still have to move to and from lift chair, toilet etc. Also take vitamin D3 and B12. Does it help? No idea.

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Ed Tobias avatar

Ed Tobias

Thanks for sharing, Mary.

Ed

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