LDN, Zinbryta, Ampyra, and More!

On Tuesday I finally saw my neurologist. There was just so much to talk about that I feel we missed some stuff but we still addressed a lot! We first tackled my lab orders and even though it is not a new order for EMSI (the mobile lab I use) I will be happy if I can just see my own labs even if that means going back to trying to get to a LabCorp every 4 weeks. We also got the clerical roadblock cleared for my Zinbryta. Kind of stupid though, they only send you 1 needle a month. I am not sure if I will have to jump through the prior authorization hoops every month or not so that will be interesting… I just want my first dose already!

So speaking of medications, I am starting a bunch of new ones. We ordered Ampyra which has a 2 month trial period where you don’t have to pay for the first 2 months of medication. So I am just waiting to get a call from them to set up a delivery. I also went home with a prescription for LDN (low dose naltrexone) 3mg which I had to go to two compounding pharmacies to try to get it filled. 1mg of Clonazepam is back in my arsenal (although last time it was 0.5mg) so that made me happy. Definitely helping with the whole being startled awake by every sound in the night. Think that’s it? Nope! Because I am either losing weight or struggling to not lose weight he wrote me a prescription for Megace (Megestrol) which is an appetite stimulant. He said I should be eating 4,000 calories a day!

Well I am going to try to set up an appointment with a new (more local) primary physician and see what he/she thinks. From there maybe a dietician (unless it is something weird like a parasite). I just find it odd that all my life 2,000 calories caused me to slightly gain weight and not lose it and then all of a sudden I drop over 20 pounds and at 2,000 calories a day I either maintain or still slightly lose weight… I though your metabolism slows down as you get older not speeds up? This is one reason I need a dietician, someone who specializes in this stuff. But first I need to make sure there is not some weird underlying causes that I would be masking by eating way more than I ever have.

Medication aside, I have been doing a lot of walking. I did 4 miles the other day (with a few rest stops) and I found a little coffee shop in a small shopping center nearby so the next day I walked straight there (about a mile) and tried the place out. I love it. Feels like an actual Mom & Pop coffee shop, not like StarSucks. So I think this will be my new spot especially because I can walk there. Only thing is I can see how this would greatly impact my wallet so I have to be careful haha…

Oh I almost forgot! I finally got my portable vaporizer and tried a marijuana strain that is supposed to help boost your energy. Not the one I WANTED but close enough to try. It is definitely weird because after smoking/vaping I am totally clear headed and I did feel motivated to “just do something” which turned out to be that 4 mile walk. So I am definitely starting to rethink a lot of my views because never have I tried a pill that did that to me without making me feel like my heart was going to explode…

Matt Allen G

I was diagnosed with Multiple Sclerosis (MS) in 2010 at the age of 20. It's been a battle ever since and I have always shared my story and struggles online!

24 thoughts on “LDN, Zinbryta, Ampyra, and More!

  • March 27, 2017 at 4:31 pm
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    LDN is my next adventure too. Seeing my doctor in a couple of weeks to talk about it. Sick of being pushed towards drugs by the Neurologist so decided to get proactive!! Look forward to hearing about your journey (as always!!).

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    • March 28, 2017 at 11:57 am
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      yeah I didn’t have luck with it in the past but maybe *I* have changed enough that it WILL help. So I will be keeping everyone informed. So far no changes but it has only been a couple days

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  • March 27, 2017 at 6:11 pm
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    Hey Matt,great to see more blogs from you and an update on how you are doing. LDN I have been using off and on but not consistently perhaps I should rethink this. I’d certainly like to hear how you respond to this new medication. I am on Ampyra and have mixed thoughts on this which I think is so individual for everyone. 4 Miles–way to go..A bit nervous about the marijuana,my research I guess is that with MS there is brain shrinkage and MJ does this as well long term-I hope you have some success with this!! I do feel like we get pushed onto every new drug and there just is not enough data on long term side effects on the new ones. I am hedging getting off of my monthly infusions-truly not sure I see any difference. Great to engage with others who battle the Monster daily! I do like Clon.this does help with the noise for sure!! Great to hear from you-

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    • March 28, 2017 at 12:00 pm
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      I am not sure I have seen any reliable data showing this, a lot of it seems like anti-pot propaganda but regardless, all my meds have ill long-term affects so in comparison this is nothing especially when you weigh in the health benefits

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  • March 27, 2017 at 8:27 pm
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    Matt! You sound so upbeat! Yay!🌞🌞

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  • March 28, 2017 at 4:24 am
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    Matt, with 2 doses of lemtrada under your belt, how did you get your neuro to allow you to try Zymbryta and Aubagio? I just completed my second dose in December and would love to try something in addition if possible!

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    • March 28, 2017 at 12:01 pm
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      Lots of people do dual therapies you just have to be REALLY on top of your bloodwork and watch things like you white blood cell count closely

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  • March 28, 2017 at 8:14 pm
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    I hope LDN works for you. I had a very bad experience with it. It made me relapse for quite a long time back in 2012. I have not recovered the loses I incurred from that relapse. I was taking LDN for 14 months and my dr. Kept adjusting the dose and we could never get it to a dose with positive effects so I had to stop. Be carful with LDN. I do hope it works for you. It does for some just like all the drugs we try for MS. Good luck.

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  • March 30, 2017 at 10:45 pm
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    Why aren’t your doctors more concerned about the weight loss? It’s not a symptom of MS, not when you are keeping up your calories. And I think you reviewed the drugs you take for this effect.

    Glad your new vaporizer and strains are working for you. The vaporizer will likely make the strain go farther, saving you money. Which vaporizer did you get?

    Sounds like you are doing better, overall. I hope that keeps up.

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    • April 4, 2017 at 1:56 pm
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      I have only seen my neuro about it, I still need to see another doc about it.

      I had the flowermate but just returned it because you need these little mesh filter things and they stopped making them… yet they still sold the vape… so once you are all out of filters you are out of luck…

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  • April 4, 2017 at 2:44 pm
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    Weird. I know Flowermate is still in full production so they should make the screens. Also, shouldn’t the screens last for a long time?

    You can buy new ones online.

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    • April 5, 2017 at 1:41 pm
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      I contacted them and they said they stopped making them. The only place I found them online was on ebay from China. Whatever, I returned it, the loading chamber was too small for my shaky hand anyways. I think I want a desktop vaporizer if the new strain I picked up yesterday really help. They seem more disabled0user-friendly haha…

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    • April 5, 2017 at 1:42 pm
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      oh and the new filters it came with I guess are a tiny bit smaller than the original so they fall out easily, so it’s easy to forget this and lose them when you are emptying the chamber into the trash. By time I figured this out I had lost them all.

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  • April 5, 2017 at 2:24 pm
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    Maybe it’s an old model of Flowermate – they just released a new model so I assume they make screens for those. But too bad – I like the price point of the Flowermate given it’s moderately high rated performance. They have one of their units on sale for $79 which is absurdly cheap for a decent vaporizer.

    But I agree about tabletops – they work better in general and some have good ways of loading even with bad hands. The really expensive Volcano has a funnel for loading – although you can always find a little plastic funnel that works for your device.

    But I don’t like using bags, since I microdose, using just enough to treat my symptoms.

    I use a log tabletop (e-nano) for these reasons – I load it by either scooping the ground herb out of a container into the glass stem or by sucking it in. I can’t use my hands well enough to get it in any other way.

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    • April 9, 2017 at 5:38 pm
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      maybe, idk, all I know is it was not MS-friendly and I won’t consider a tabletop unless I find something that works great.I last tried “green crack” and was very disappointed

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      • April 9, 2017 at 5:55 pm
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        Most MS patients I know use indica-leaning strains to help with pain and spasticity. Although they can be sedating so they use these in the evening. Maybe a more balanced strain like “Blue Dream”?Strains like “Green Crack” are good for energy if that is what you are after. I don’t like that one either. A good sativa for energy and mood lift that is often available is “Flo”.

        Seriously, I don’t know of many models that are truly MS friendly. Most are hard to load and easily broken if dropped. My log is easy to load but the stems will break if you drop them, although they are pretty cheap to replace.

        If you find a strain that works, the alternative is to make your own edibles out of it. Pretty easy even with MS and nothing to break or replace.

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        • April 9, 2017 at 6:49 pm
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          I’m going to ask my local MS community which vaporizer they find best. Is your eyesight OK, since that impacts loading and cleaning, etc. Price point is going to be an issue.

          Also, if you can say which symptoms you are most trying to reduce, I will ask them which easily available strains work for that. Also, you have to watch out for some strains if you have anxiety or if you worry they might make you dizzy, etc. Email me if you wish.

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          • April 11, 2017 at 1:45 pm
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            -sigh- I WAS looking for something that helps fatigue but I think my level of fatigue is just too high… so idk,

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        • April 11, 2017 at 1:44 pm
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          I was just thinking about that yesterday, I wish I had edibles of these strains or even oils.

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          • April 11, 2017 at 5:35 pm
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            Try “Flo” for energy. Inexpensive and commonly available. Makes you very happy and feels like someone just turned on the sun. Full of energy and no anxiety. If you have access to your kitchen and have enough hand control to do simple cooking, I can email you some good links on making edibles. Very simple. Either with a crockpot or with a sauce pan and coconut oil or butter plus water. You also need a kitchen strainer and some cheese cloth. Takes about an hour and you can use it in a brownies mix or something.

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            • April 11, 2017 at 11:13 pm
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              I have no interest in cooking myself, I will just screw it up haha

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  • April 5, 2017 at 3:08 pm
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    I’m an MS patient advocate for our medical coalition, so I have to ask, what strain and how did it help? If it’s really good for MS I have to talk our local dispensaries into carrying it!

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