[ed-tobias]

Thanks for your comments, Scooter. We’re absolutely all different, which is why I’m anxious to read more comments on this subject. Congrats on your top score and welcome to the forums. I hope you’ll comment on other topics that we post here.

Ed

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I was diagnosed in 1980 and I was a participant in the Phase III trial of Avonex. It was my first DMT and moved from it to Tysabri, Aubagio and, most recently, Lemtrada. It’s always been a consultation between my neuro and me, taking into account risks, benefits and cost. And, it’s always a balancing act. Cathy’s neuro suggested Ocrevus as one of her 3 choices. I have to wonder why Ocrevus and not Lemtrada.

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Here I am walking Joey, our Cocker Spaniel. (Joe Cocker, get it)? He’s 11 years old but still thinks he’s a puppy.

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I’m going to point this out to a friend of mine.

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I have two scooters. My larger scooter is a Pride Go-Go. It breaks into four parts, the heaviest of which is about 40 lbs. I used to be able to break it apart and put it into the back of my SUV, but I can’t do it anymore. So, I now have a motorized lift on the back of the SUV to carry it. I just drive onto it, raise it up and off we go.

My smaller scooter is a TravelScoot. It only weighs 35 lbs TOTAL. It also folds up like a baby stroller and can fit in the trunk of a car. It’s lithium-ion battery goes forever and I’ve taken the TravelScoot with me on trains, boats and planes, and through 15 or 16 countries.

Buying a scooter, years ago, was one of the best things I’ve ever done.

Ed

 

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Carol,

I’m in MD, where the distribution center “budtenders” are able to recommend blends. I don’t yet have my card but my wife, who has pain issues, has one. Based upon her experience, I would suggest going light on the THC (which provides the high). Something that’s higher on CBD and lower on THC might be better for your needs.

I wrote a column a few months ago about MMJ use. It may have some useful info for you.

Ed

https://multiplesclerosisnewstoday.com/2017/08/17/ms-symptoms-legalized-medical-marijuana/

[ed-tobias]

I also use Baclofen (10mg) at night to help relax my jumpy/crampy legs. Sometimes it works better than others. I don’t use it during the day, or at a higher dose, because it relaxes my legs too much.

[ed-tobias]

Hi Jonathan,

I’ve been taking a small dose (10mg) at night as well, for years. Baclofen helps ease my MS spasticity and lessens my jumpy legs in bed. Sometimes it helps more than others.

So, you’re using it as I am. And I’m also trying to keep my wife happy. (Happy wife, happy life).

Ed

[ed-tobias]

It’s interesting that Thursday a Food and Drug Administration committee approved the use of CBD, produced from the plant rather than synthetically, for controlling some serious epileptic seizures. A vote by the full FDA is expected in June.

[ed-tobias]

Hi Cassie,

Welcome to the forum. Yes, it occasionally happens to me. My episodes aren’t usually serious or long-lasting, so I just live with them. I’ve read about others who have much more serious problems. Hopefully, they’ll chime in here.

 

Ed

[ed-tobias]

Faith,

Here’s a little more info to add to what you’ve gathered.

https://multiplesclerosisnewstoday.com/2018/04/17/five-ms-patients-describe-how-ocrevus-has-changed-their-lives/

Please let us know when you make your decision and why you decided what you did.

Ed

[ed-tobias]

My neurologist prefers Lemtrada to Ocrevus, for most patients. She says the risks for Ocrevus are greater than for Lemtrada, the rewards for Lemtrada are greater than for Ocrevus and Ocrevus, having only been approved about a year ago, still needs more real-world study.

Here’s a facebook post from a neurologist who seems to agree. Note this quote near the end of his detailed post: “The warnings on Lemtrada are overdone, and those on Ocrevus underdone.” 

https://www.facebook.com/AdvNeuroInst/photos/a.1045730555473434.1073741829.165771923469306/1452541411459011/?type=3

 

[ed-tobias]

Sorry, the articles on MS News Today are limited to writers who are employed by the website and Patient Columnists, like me, most of whom have worked, professionally, as journalists and are now freelancing. Responding to these stories and columns is the way to spread your word on this website.

I’ve written all that I’m going to write on this subject, at least for a while, but I will check the website and Yahoo group that you suggest.

Ed

[ed-tobias]

Hi RW,

Thanks for your comments.

You may be interested in a column that I wrote a few months ago, when the FDA issued its warning about Gadolinium. https://multiplesclerosisnewstoday.com/2018/01/12/multiple-sclerosis-concerns-about-gadolinium-mri-dye/

Ed

[ed-tobias]

Hi Mary,

Nice pick of you with your Saint. I have the same problem when we encounter some dogs, but I can never tell which will be a problem and which won’t. But holding onto a Cocker is a lot easier than holding onto a Saint!

Thanks for commenting,

 

Ed

[ed-tobias]

Hi Mary,

Nice pick of you with your Saint. I have the same problem when we encounter some dogs, but I can never tell which will be a problem and which won’t. But holding onto a Cocker is a lot easier than holding onto a Saint!

Thanks for commenting,

 

Ed

[ed-tobias]

The first day of Round 2 had a little speed bump. About 15 minutes before the end of the Lemtrada infusion I had a blood pressure drop and I felt dizzy and shivery. This has happened to me in the past, starting log before Lemtrada infusions, so I don’t think this was connected to the infusion or the drug. Neither does my neurologist. This feeling passed, and my BP returned to normal, after I spent about half an hour fully reclined in the infusion chair.

I’m back in the chair for Day 2 as I write this and will keep everyone posted on how things go today.

[ed-tobias]

Hi Jon,

I’d suggest a second opinion, preferably with a neurologist who specializes in MS. I’d also ask him to review the MRI report with you and to show you on the MRI image what he’s seeing that makes him certain that you have MS.

Ed

[ed-tobias]

Thanks for chiming in, Jonathan. I also use my smaller, lighter TravelScoot to walk Joey but it’s much easier with my Go-Go. He enjoys the walks and I can move fast enough to let him get up to a nice “trot.” Please let us know how you and your pup like dog-scooting.