To be fair, the Baclofen did ease the spasticity somewhat, less foot-drop.
But, at the cost of me being spaced the entire time. I was having to take 10mg every 2-3 hours. I enjoyed it, but long term I knew it wasn't the best course.
The Clonazepam. That is one heavy-duty tranquiliser. Again, a very nice way to drift through life, but no way could I take that every day.
I talked to four different neurologists, and It was like getting blood from a stone. Muscle relaxants and tranquilisers. Take it or leave it.
The way I figured it was my muscles are atrophying, wasting away. Maybe if I can stimulate them from the outside, maybe I can do some good, maybe I can relax some knotted up, spastic muscles.
And, do you know? It actually worked. I used it so much I got electrical burns on my legs. Had to stop using it. I'll restart again soon.
It was when Googling "experimental spasticity medications" I found 4-aminopyridine. For some, a magical anti-spasticity drug.
My neurologists refused to prescribe it.
As well as spasticity, my other enemy is fatigue. Not too much information out there about HSP fatigue, so I spent a lot of time on MS websites.
It seemed to be a choice of Methylphenidate, Amantadine, or Modafinil.
I couldn't find any doctor who would prescribe me Methylphenidate, but I was prescribed Amantadine and Modafinil.
The Amantadine didn't work, and I wasn't too happy about taking a drug intended for Parkinson's disease.
I was also prescribed a tricyclic antidepressant that supposedly had stimulant potential. But this made me feel awful. Incredibly powerful drug.
I tried Gabapentin for spasticity, blimey. I was so spaced out. Not unpleasant, but I couldn't imagine that everyday.
I tried Tizanidine but that made me feel sick, sick right to my very core.
Modafinil worked extremely well for my fatigue, and it actually helped my spasticity as well. Very good.
I think it helps spasticity simply because walking is such hard work, every step has to be thought through. Leg up, balance, steady now, leg down, not too hard, balance, next leg up, not too high, steady, balance, etc.
Takes a lot of mental and physical energy. But on Modafinil, even the most tedious tasks are a piece of cake. I could actually walk again, finally.
But, the Modafinil costs a fortune. I can't afford it.
I started ordering it from India. Very stressful every time. Will I get ripped off? Will I get arrested? Am I ordering rat poison?
Then last week I had the results of my genetic test. Mutation of my ABCD1 gene. I have AMN.
Going for a blood test for VLCFA and a brain MRI tomorrow.
I had 6 MRI's two years ago, all fine. Getting worried now though.
I'm 44 now, with 4-aminopyridine and Piracetam I can still walk unaided but if I stop the drugs it's terrifying the state I am in. Staggering about, hanging onto walls, et al.
Anyway, that's enough for now.
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monkeybus
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Thanks for your extensive history and the effort that you put in. Unfortunately the links do not work so I am a little unsure on what you bought from Amazon. The 4-aminopyridine has many names and is known as Ampyra in Australia, Fampyra , Fampridine and other names in other countries. I am so glad that it worked for you as it has been in use for MS for many years. Sadly it does not always work for all AMN sufferers. I am keen to know more about the equipment that you bought if that is alright with you. It is a great pity that you have had to fight so hard to get a correct diagnosis. I wish you all the very best.
The aminopyridine doesn't work for me, but found a Safeway pharmacy in San Jose, Calif, that charges about $78/mo for a compounded version, including delivery (I live in Los Angeles). My neurologist did prescribe it, but I was told my medical plan won't pay and if I went for the non-compounded version it would cost hundreds of dollars. The aminopyridine does work for the friend who referred me to it. I can provide the pharmacy info if you want. I don't take as much as you do; maybe I should up dosage? I haven't quite given up yet.
How does one get the Monafinil?
I use a cane - it's not so horrific. Sounds like it's time to start considering it, unless of course this Monafinil is working so great.
My lot charge $50 for 100 capsules of 4-AP , postage included.
I spent a long time researching 4-AP and it needs to be properly stored to stay viable. My supplier has never let me down. I've bought from other pharmacies in the past and they were no better than sugar pills.
I've recently ordered some 4-aminopyridine-3-methanol. Much more effective, stable compound, less side effects, 1mg dose.
When I get home I'll edit my original post and freshen up the links.
It's, for me, a very credible anti-spasticity drug. Mind you, I take it with 4-AP, Modafinil and Piracetam.
My neurologist told me to take 2400mg, that amount gets me completely off my head, but 200mg works nicely.
But it's a lot of chemicals I am feeding my brain with. I am, though, happier taking the above than Clonazepam and Tizanidine.
I'm very interested in knowing what medications everyone else is taking.
I still haven't been prescribed Cortisol yet. Seeing my doctor tomorrow.
What do you think?
I admire you for your tenacity in getting the right diagnosis. My Mother had her varicose veins removed many years ago. Sadly she only found out that she was a carrier of ALD when my son was diagnosed. Other female family members have since been diagnosed as carriers. So many people are given the wrong diagnosis and wrong treatment.
I do feel however that it could be dangerous to by drugs online, AMN and ALD sufferers experience a wide diversity of symptoms, and what works for one, does not for another, and I would not want to influence people in an adverse way. I realise that not all of us have the benefit of the NHS or private health insurance, but I is always preferential to discuss this with a doctor first.
Hi....it was interesting reading about your drug regime. I started on baclofen and initially it was great. However as I needed ever increasing amounts, I became withdrawn and slept all day , every day. The Medtronic pump inside me has proved a godsend. It has been relatively hassle free although it did need to be replaced unexpectedly once ! I get extra doses during the night to stop cramping.....all in all a pretty painless and effective aid !
Hi Monkeybus....I really appreciate reading your entries, and admire your strength and tenacity . I can understand your wife's nerves....my wife keeps herself busy/ calm, by trying to find ways to make life fuller for me. When we got the news initially....she bought me a nine month old Labrador ....her logic, she didn't want me to be alone. Later on, as I was wobbling around, she had a special harness made for the dog to act as a support when I was walking....this worked for ages, until I got too fragile. Then I got a nanny walker...! The harness for the dog was handmade in America and resembled the harnesses used by guide dogs but was rigid....fixed. It was brilliant while it lasted..... As I get to a new stage, my wife tries to find something to help or over come difficulties. My garden has been my sanity since giving up work due to the AMN. Liz has had pathways made all around the garden with handrails !!!!! All garden beds are raised so I can sit on the edge and tend the plants.i know she feels very alone dealing with the AMN, but by trying to help keep me active, it is her way of coping .
5mg, 4-5 times per day. I love this stuff. I can walk, and I can walk fast. Has to be fast, my slow walking is terrible, it doesn't really help with balance, but you can walk fast.
"Animal studies show that 4-AP can improve impulse conduction through demyelinated lesions. In patients with MS this translates into improved walking speed and muscle strength of the lower extremities in a subset of patients at a level that is often of clinical relevance. Phase III trials demonstrate approximately 25% increase in walking speed in roughly 40% and improved muscle strength in the lower extremities. Furthermore, 4-AP might have an effect on other domains such as cognition, upper extremity function and bowel and bladder, but this warrants further investigation."
4-aminopyridine has side effects, mostly nausea, 4-aminopyridine-3-methanol feels very clean. Zero nausea. 4-ap, I have to take 5mg, several times per day. 4-aminopyridine-3-methanol, I take 0.5mg once per day.
Yes, an untested, unapproved drug. I am experimenting on myself. So far, so good.
"A combination of therapeutic exercise and TENS may reduce spasticity and improve balance, gait, and functional activity in chronic stroke patients."
EMS is Electrical Muscle Stimulation, different to tens. Electrical impulses work your muscles from the outside. Used by many athletes/physiotherapists.
Relaxation of muscle spasms;
Prevention or retardation of disuse atrophy;
Increasing local blood circulation;
Muscle re-education;
Immediate post-surgical stimulation of calf muscles to prevent venous thrombosis;
Maintaining or increasing range of motion.
My right, predominantly spastic leg, the calf muscle was quite atrophied. I have about 75% rebuilt it with a combination of EMS/TENS and walking. Walking with 4-aminopyridine and 4-aminopyridine-3-methanol.
With the above two drugs, I can do the heel -toe walking, not the spastic clumping about, toe-walking. I have learned to walk again.
Modafinil.
A godsend. i suffered with fatigue for a decade. Ten years of sleeping in the afternoon, living in a twilight world, going to bed at 7pm.
Modafinil rescued me from that. I can function normally, play with my son, not sleep in the afternoon, read a book without passing out after 10 pages.
I take it every day, usually round lunchtime as the fatigue starts to kick in. It works every time.
Thank you so much for your efforts with these posts, they are fantastic and give so much information. Your history from a diagnosis viewpoint, not to mention the avenues you've taken sounds very much like my own journey and subsequently I have a lot of questions that I hope yourself or others will take a moment to contribute too.
1) The initial diagnosis of Hereditary Spastic Paraparesia, was this made on a best effort basis on symptoms alone? This is my scenario at the moment, I've had a basic genetics test, MRI, Lumber Puncture ... all inconclusive but I have been categorised as having HSP. My symptoms are as per your description, heavy spasticity in the legs, foot drop ... much worse if I'm drinking/fatigued etc. I was given Baclofen which didn't work for me without my brain going to mush.
2) You mention in this thread and on another in this forum, having to see numerous neurologists and eventually managing to find someone who got you to a diagnosis of AMN after first going through Varix and then HSP. At the moment it is like I'm stuck on the HSP branding like a broken record ... granted, it fits but there's no actual proof other than spasticity and little is being done to look at other possibilities, you must know that feeling of having no diagnosis :-D. I'm also based in the UK, could you recommend any particular neurologists or the process you went through in getting a second/third/fourth opinion, if I need to go private and travel I will happily do so.
3) Based on your recommendation, I bought the NeuroTrac rehab machine. Could you let us know what programs you use, what muscle groups you target and for how long, also do you use the TENS or the EMS cycles for your recovery.
4) Did you ever speak about options like Botox or Phenol injections in the legs. I was told the hamstring muscles were too big and Botox was not an option although my research shows a lot of people have Phenol injections for larger muscles.
5) Piracetam is great! I use docsimon to get mine. I've been told by a friend that it's very important that for stack purposes, you include Choline as this is needed to support Piracetam, I see you already take this, whats your thoughts on this and what dosage of Choline do you use. It would be good to have an overall view of your stack with doses/timings if you have time.
6) 4-aminopyridine-3-methanol or commercial variations under the same name ... fampyra, ampyra etc, the links you provided and my own research shows this to be one of the most exciting drugs from a HSP/AMN/MS/Spasticity perspective, the mod4all link is very interesting. The only aspect that concerns me is the disclaimer which isn't actually there for 4-aminopyridine on the same site. Whats your thoughts on this.
Yup, it's pretty expensive even with health insurance and especially because you're given the brand name ones. OP went the generic route which a lot of people are doing to save money but it's not always easy to know which sites to trust.
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My introduction - AMN
AMN and spasms 
