Since coming off Gabapentin and exclusively taking 4-AP-3-MeOH, Modafinil and my cocktail of antioxidants, I feel good. Very good indeed.
Vitamin B5
Vitamin B3 (Niacin)
Coenzyme Q10
Pyridoxine (B6)
Vitamin C
CDP Choline
Phosphatidylserine
ALCAR
L-Tyrosine
Lion's Mane
PEA
Hordenine
Centrophenoxine
NAC
NALT
Alpha Lipoic Acid
Astragalus
Reishi
DHA
Biotin
All the above, I take at maximum daily dose, divided into three daily doses.Except for Biotin. That's at 1000XRDA.
I'm now looking at Mito-Q, a mitochondrial nutrient that has been claimed to reverse MS. A bold claim. Likely rubbish, but all the same, there is something in all of the above. I'll refer everyone to my antioxidants thread from a week or so back.
I feel good. Very good. Less spasms, stronger legs, more energy, taking less Modafinil and 4-AP. Even my old enemy fatigue is a different creature nowadays, and I'm about 4 weeks into this regime. Having to stretch less as well.
4 weeks is but nothing in this very unscientific clinical trial I am running on myself, but I know my body. I know balance, spasticity, fatigue. I'm doing better now than I ever did.
And, like I posted before. Vitamin C is a grade A laxative.
The mitochondrial nutrient thing is replete with potential candidates.
I'm going to add more. alpha-tocopherol is a superb antioxidant, and there is a very real science behind all of this. I'd like to think that the antioxidants are mopping up all of the free radicals caused by the VLCFA's in my body. Or, more likely, the optimal levels of nutrients could just be allowing maximum nerve-conduction throughout my CNS?
Who's to say? Certainly not my neurologist. I'll be seeing him on Monday and it'll be "More Valium, Mr Monkeybus?".
Anyway, I'm now going to seriously look into upregulating my ABCD2, and lowering my VLCFA levels
A few potential candidates out these.
Benzafibrate.
Valproic Acid.
DHEA.
4-PBA.
All the above, and alpha cyclodextrin.
LO/Mustard Oil, et al is still an option, along with the statins.
Was just over a year ago that I was diagnosed. I've come a long way, and I haven't rushed into any of this.
I have so much information I've collated on all of this over the last year. I'll probably set up a website with it all indexed/clickable. Watch this space.
Have to do something. I'm doomed.
That's it for now. If anyone has anything to add, however tangential, then the floor is yours.
Talk to you all later.
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monkeybus
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Seizures. How scary is that? I have never had seizures off even regular 4-ap. From what I've read (which is not a great deal), the seizure risk depends on the number of brain lesions and the 4-ap dose.
The only thing that prevented me taking too much 4-ap was the side effects. I find it rather enjoyable for the first few doses of the day, but after about 20mg (split into 5mg doses), the side effects hit me.
I've read about the person who erroneously got given a single capsule of 100mg 4-ap from a compounding pharmacy. I should think that would give an elephant a seizure.
4-AP-3-MeOH is completely different for me. Feels nice, my skin feels silky smooth, colours brighter. my fine motor skills are better, can pick up things with my toes, 4-ap just helps me walk quicker. I take so much of that stuff if I am having an active day, like 10mg-ish. Couldn't imagine taking 100mg of 4-ap (over a day), but I certainly have tried.
Have any of us had any seizures, for any reason? That would be one more thing to worry about, wouldn't it?
Thanks for the info. I've been taking baclofen for about 5 years now. I've also tried tizanidine. Neither seem to help anymore. I was diagnosed when I was around 19. I will be 25 in June and the only thing that they want to try is a baclofen pump but I don't want to deal with the hassle of that.
Travzw, you are young. Anything has to be worth a go. But I thought long and hard before I took both 4-AP and 4-AP-3-MeOH, wasn't that bothered though, people on the MS boards are taking some mind-bending cocktails of meds + MeOH.
I still like the old Baclofen, still use it for occasional muscle spasms at bed time.
I'm sure medical science could churn out a decent spasticity medicine if it tried harder. I hear about drugs in the pipeline but i am not holding my breath.
Have you tried old fashioned 4-AP? Side effects-a-plenty.
I've never had any unpleasant effects from 4-AP-3-MeOH. Sometimes, on it, I am so confident, I walk too fast and stumble because it works too well. Sometimes, that is.
I've posted this before, but I haven't fallen over since I started taking 4-AP/meoh. I trip, I stumble, but I always recover. And I used to fall over a lot in the old days. Twice I went for an X-ray on my hand on account of falling over. Falling down was part of the game for me. Not no more.
Yes. I have had my share of falls. I use a cane now. I have been using one for around 2 years and still fall from time to time. I have gotten a lot better at managing the falls to where I don't really hurt myself like I used to. I just a few weeks ago found out about these medicines so I haven't had a chance to try them yet. I have been to see my doctor about it this week and we're working on trying to get some. I'm definitely going to try it.
I went through two neurologists before I found out about 4-Aminopyridine. In those days I was still coming to terms with my disease, I was in the hands of professionals, they knew what was best.
Valium and Baclofen.
I was pleading with one Neurologist, "There must be something else, some other medicine??". No, that's your lot, take it or leave it.
Took a lot of Googling to find 4-AP, yet it's been known in the MS community for years. I like as well that it helps people with spinal cord injuries.
I do but not much. I take 10mg baclofen 2 times a day. 4mg tolterodine at night for urinary issues. 10mg nortriptyline at night for headaches and foot pain. My monthly cost for those and a few others for constipation and indigestion is no more than $25 a month. I've priced 60 tablets of 4-ap at a compounding pharmacy and it was $45.
Thanks Travzw for mentioning the compounding pharmacy in the US! I'm in NY and monkeybus has convinced me 4ap-3-me-oh is worth trying. I have been going back and forth with my doctors and still do not have any to try. It's still in progress. I first heard about this last November from Dr Eichler's nurse at Mass Gen. Are you near Boston? Could you tell me the name of the pharmacy you consulted? You can send me a PM as well.
Thanks. I believe this version is the one my doctors are talking about. It's not Ampyra, the brand version. Could you send me the contact details? There may be compounding pharmacies closer to NY, but as yet I haven't found any. Or another thought, how did you find yours?
I do a lot of standing in general but as you all mentioned fatigue earlier, I feel that more this year. Still, I have good days and bad days. You're up rather early? Time for bed for me!
I'm thinking about just getting a week's worth to try it just so I don't waste money if it doesn't help. I have been up to 20mg 3 times a day but it made to tired with not very much difference.
Join the club. Fatigue was the easiest thing for me to fix. Tried a lot of different things but Modafinil is like a beast. No arguing with that. Then again, doesn't work for everyone.
I've posted here how it helps my spasticity, walking is hard, both physically and mentally, but with 4apmeoh and Modafinil I can bounce along quite well.
Keep meaning to post a before/after vid to show everyone.
Hello Travzw. No burning, no nothing. Felt a bit sick though, but I think that was on account of reading too much about it being a poison. Never felt sick after that.
4-AP is marvelous. I forgot to carry some the other day, had to get used to hanging onto walls for the day. Going through an extremely high spasticity/fatigue period at the moment. The only positive thing is I know it will pass.
Very high pollen count round by me, coincidence? I don't think so.
I read up a lot on 4-AP, great feeling in all of my extremities. Fingers, toes. And.... brace yourself, sexually. 4-AP is great. Take too much and it's like ants crawling over my body.
4-AP-3-MeOH is even better. The best spasticity medicine I have ever taken.
I take 10mg every hour. I keep taking it until it feels uncomforrtable.
Where did you buy the 4-AP?
I take 4-AP-3-MeOH with the same dosing schedule, 0.5mg-1mg every hour.
Do you take it first thing in the morning? For me, it's part of the day. Empty stomach, cup of strong tea, 4-AP and Modafinil. They both come on quick.
I've seen online 4-AP helps people with SCI. Then again, some people it does nothing.
Then again, I've tried 4-AP from Australian and USA compounding pharmacies and they were ineffective. Mod4all is always a bit slow to fill my order but their 4-AP is excellent.
If you hunt about online there are message boards where they discuss all this, the shelf life of the 4-AP (unstable chemical), how the filler can degrade the 4-AP, and so on.
Do you know what the filler is? I know Mod4all use BCAA as filler.
4-AP was an obsession of mine foe about a year, I read so much about it.
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