[J Howell]

I dunno, but for years I wondered why the small town I went to high school in had such a high rate of MS cases among people just slightly (3-5 years) younger than me, my brother included…and then I was diagnosed.

I always thought it was strange that one of the big 3 employers in town was the originator of aerosols, and their one remaining big seller (though you can’t buy it in the US!) was a neurotoxin bug spray used mostly by airlines in third world countries, and an awful lot of people in the town were suffering from neuro disorders. That company’s main building suffered an explosion and burned to the ground a couple of years ago. Things that make you go hmmmmmm…

[J Howell]

These aren’t symptoms I’ve had so far, though since I was diagnosed I haven’t had dental work or flown. I do need to schedule some dentistry, though…hopefully I won’t have any extra discomfort.

The “hot foot” I haven’t experienced since I was diagnosed, or recently, though I had something very similar off and on for a long tie years ago. Wonder if that was an early sign I missed? I chalked it up to working on my feet all day every day for years, but maybe there was more to it?

 

[J Howell]

I’m all for it!

[J Howell]

One week of Gilenya down…so far, so good, though I can’t say that I notice much difference other than some stomach upset (that frankly might be a lingering side effect of Solumedrol a couple of weeks ago) one way or the other.

Hoping it will pump the brakes on new lesions and give my CNS some time without disease activity to recover. We’ll see.

[J Howell]

Hahahahaha! Nice.

I have a few friends (and friends of friends, mostly) who do standup, and a few more who do stage comedy- usually drag shows built around things like the Golden Girls, etc. It takes a special kind of clever to be good enough to keep that sort of thing up for a month, much less thirty years. Bravo!

[J Howell]

I’ve found CBD to be incredibly helpful! I’ve also found that all CBD products are not created equally. The ones that are good, though, are great! So far I’ve found that, averse though I am to smoking, the most effective CBD I’ve found has been cannabis with high CBD and no THC content smoked. It seems to work faster that way. Your mileage may vary, but that’s been my experience.

[J Howell]

Interesting…I’ve not heard of Modafinil, but I’ll look into it. At the moment the real chore is ascertaining what is actual cognitive fog, and what is normal- aside from having MS become a “thing” recently, we’ve had a ton of other things going on in our household and at work as well, I find it difficult to get to bed early enough to get a proper amount of sleep, and occasionally symptoms wake me or keep me up on top of that. My colleagues seem earnest when they tell me they haven’t noticed anything so far, but I feel it. Whether it’s because of MS or just not being helped by it is the question for me.

If you don’t mind my asking, what kind of producing do you do, John? I do some music production on the side, mostly for my own enjoyment. The biggest irritant of this MS episode is the timing- I had just assembled myself a new instrument and started preproduction on a record I’d been putting off for years, only to have my right hand refuse to work right as I was really getting going. My abilities are slowly returning, thankfully, but it definitely derailed me for a while.

 

Jono- how are things?

[J Howell]

Thanks Nicholas! I’m a little anxious but keen to start tomorrow. “Cog fog” is one of the most worrisome aspects of MS for me already- I write for a living, so not being able to quite find the right word is a big problem for me! I’m already worried that I’m slipping sometimes, but my colleagues assure me that I’m worrying more than I should- so far, at least.

I’m hoping that Gilenya will put the brakes on any new lesions. As noted before, it’s done well for my brother, he’s had some lesions basically disappear even, so I’m hoping that given some respite from new lesions my body can remyelinate at least a little.

[J Howell]

Jono- I hope you’re doing well. How are things now?

Nicholas- what were the side effects you experienced with Gilenya that led you off it for a bit?

I was just diagnosed a few weeks ago and get my monitored first dose of Gilenya next Tuesday. I’m a little nervous about the whole heart rate drop thing, but my brother has done very well with it. It’s been great for him. His MS experience was all over the place before, but he wasn’t always compliant- which is somewhat understandable, considering his aversion to injections, he wasn’t great about taking Copaxone as prescribed. Gilenya has been a godsend for him.

So far I feel like, as MS goes, it could be much, much worse for me. I’m still keen on getting this as managed as possible as soon as possible. I don’t have time for this crap! 🙂

 

 

[J Howell]

Ha! Yeah…I never had much skill rolling either, even back when I was a recreational connoisseur. I use a lovely glass pipe made by a friend who’s a talented glassblower.

I don’t mind the liquids I’ve tried thus far, but so far my experience has been that even the better ones weren’t as consistent as I’d like. Some bottles seemed very effective and the next, not so much, even when it should have been identical…or maybe I’m just imagining that. Smoking seems to work faster in any case, though. That said, I don’t really like the idea of smoking anything, so perhaps I need to research further to find a good liquid.

Sometimes I feel like it’d be easier to just smoke pot like…well, like I used to, really. Unfortunately at some point several years ago, something changed and all of the negative side effects I used to think people were imagining or exaggerating about marijuana started happening to me. It went from something I’d always enjoyed to an instant panic attack. Not good! CBD gives me all of the positive, non-psychotropic effects with non of the negative weirdness. Granted, there’s no “high”, but that’s not what I’m after anyway. For lack of a better descriptor, MS aside, CBD usually just makes me feel “normal” again. It doesn’t make the MS symptoms disappear by any stretch of the imagination, but it seems to lessen the severity of many of them, especially muscle spasticity.