Recently diagnosed with AMN

Warning, this post contains links.

Mods, if this is not allowed, please don't ban me, just delete this post.

I always thought the problem was the varicose veins in my legs. I was 36 at the time.

I'll get them stripped sooner or later, I thought.

Legs got heavier and heavier, I started to fall over (mostly when drunk).

I finally had my veins stripped, 25 cuts in one leg alone, a hospital record.

And, my legs did get better (a bit), but no.

I went back to the hospital, the cardio vascular specialist, he sent me to neurology.

Tests, tests, tests. 8 MRI tests, spinal tap, everything.

Hereditary Spastic Paraparesia. A big shock.

Medicine? Clonazepam and Baclofen.

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.

Electrical Muscle Stimulation.

I bought this - amazon.co.uk/NeuroTrac-ECS3...

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?

Finally, I found mod4all.com Modafinil and 4-aminopyridine, and they are in the UK.

The 4-aminopyridine really does work. 5mg, 5 times per day. Eases spasticity, foot drop, and fatigue.

I am resigned to the fact I will be on drugs every day for the rest of my life. The Modafinil/4-aminopyridine combo is so far the best yet.

I still feel tired/fatigued, but nothing like before. No more aching, tight calf muscles, no more falling asleep in the afternoon/going to bed at 8pm.

medpagetoday.com/MeetingCov...

Finally, light at the end of the tunnel.

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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  • 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.

  • Hello AussieBob. I'm on my phone now, yes, the links don't work.

    I'll have a look when I return from work. I have more to post

  • 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.

    Thanks for your sharing.

    David

  • Hello Davidd,

    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.

    Modafinil has been a godsend to me.

    I'll report back.

  • There you go, folks.

    I edited my post, the links should work now.

    I've actually re-evaluated Gabapentin.

    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.

  • You are absolutely right.

    I discussed Modafinil and 4-aminopyridine in depth with my doctor.

    He supports me fully. I take everything under his supervision.

    A good doctor can be very hard to find, in my experience.

    Either way, I'll get my treatment. That's non negotiable

    As health budgets get squeezed, there'll be plenty more mail ordering.

    I do recommend mod4all, they've never let me down.

    It mildly annoys me that I'm forced to go down this road, but I have no choice.

    All the best to your family, Kathy.

    This is not the life I had planned.

  • 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 !

  • Hello Nordek,

    Not so much a drug regime per se, more trial and error as I stumbled through the Internet, grey market medicine world.

    I cracked it in the end with Modafinil and 4-aminopyridine, but it was a long, long journey.

    How much longer I can just treat the symptoms, I know not. Papering over the cracks is what it is, but better than the alternative.

    There are some excellent medicines out there, I'm currently researching remylenation drugs, even human growth hormone.

    Do I sound crazy?

    I don't know, but considering I was only offered tranquilisers, I think I'm on the right track.

    2 weeks till my MRI results are in. My wife is terrified. I'm more one day at a time.

    I've been told I can have stem cell therapy immediately if it's hit my brain (did I include this in my original post? Can't remember)

    I'll also point out that I've really developed a taste for Gabapentin. Far superior to Baclofen.

    Once you get over the initial space cadet period it's very effective for spasticity.

    I'll post more later if anyone is interested.

  • 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 .

  • Right, I'm bumping my old thread with some fresh information.

    So I'm 10 years into AMN, I'm 44.

    If I don't take any medications, I fall over. I fall over a lot.

    I take Piracetam, 2 grams, about 3 times per day. It really does ease spasticity.

    Read what the British Journal of Medical Practicioners says (actually, they say very little, but they go to the trouble of mentioning Piracetam)

    bjmp.org/content/approach-s...

    But, how about this. Different disease, but Piracetam helps.

    ncbi.nlm.nih.gov/pubmed/356288

    Like I've said before, there is no placebo with spasticity, you either fall over, or you don't.

    I get mine from here

    powdercity.com/products/pir...

    Cheap, and it really does work.

    L-threonine.

    Have a read

    ncbi.nlm.nih.gov/pubmed/174...

    "L-threonine significantly suppressed the signs of spasticity"

    scireproject.com/book/expor...

    "L-threonine is an α-amino acid with a putative mechanism of anti-spastic action through increasing spinal glycine levels"

    I buy it by the kilo. 6 grams per day is the recommended amount. I take it with my Piracetam.

    I get it here.

    purebulk.com/l-threonine-po...

    Cheap, it works (for me).

    4-aminopyridine.

    Now, this really does ease spasticity. Have a read.

    mult-sclerosis.org/news/May...

    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.

    ncbi.nlm.nih.gov/pmc/articl...

    "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."

    I get mine here.

    mod4all.com/zencart/index.p...

    Cheap, and it really works.

    4-aminopyridine-3-methanol

    Here we go, a research chemical. Very little information about this on the Web.

    Some people take it (I take it).

    thisisms.com/forum/drug-pip...

    ncbi.nlm.nih.gov/pmc/articl...

    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.

    mod4all.com/zencart/index.p...

    No way am I going to stop walking. Whatever it takes.

    Also, with 4-aminopyridine-3-methanol my muscles feel so relaxed. It's such a relief.

    TENS/EMS.

    This really does reduce my spasticity. As I type, I am enjoying a modulated 4 hour TENS session.

    ncbi.nlm.nih.gov/pmc/articl...

    "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.

    mod4all.com/zencart/index.p...

    Remyelination.

    Is this possible? Maybe so.

    Biotin.

    medscape.com/viewarticle/84...

    "It's hypothesized that biotin may help to slow, stop, or even reverse the progression of disability associated with demyelination."

    300mg per day. A large dose, potentially toxic. A lot of MS people take it. I've just started on it.

    I get mine from Amazon.

    amazon.com/BulkSupplements-...

    Cheap, worth a try.

    There are quite a few remyelination substances out there.

    Guanabenz looks very promising.

    fiercebiotechresearch.com/s...

    I'll give it a shot.

    I've ordered some CDP Choline as well.

    brainprotips.com/cdp-cholin...

    powdercity.com/products/cdp...

    Muscle spasms at bedtime.

    Awful, I suffered for years, Booze was my antispasmodic of choice for a long time until I discovered Benzodiazepines. I tried the lot.

    Zanax, Brotizolam, Temazepam, Valium, Clonazepam. To name a few.

    I settled on Etizolam. 0.5mg at bedtime. It has a very short half-life. Kills the spasms stone dead and allows me to drift off to sleep.

    As I've said before, the Benzodiazepines will send you off to sleep, but they play havoc with your sleep architecture.

    L-theanine has been proven to increase Alpha brain waves, putting you into a much deeper sleep. Very relaxing stuff, non drowsy.

    zliving.com/wellness/emotio...

    ncbi.nlm.nih.gov/pubmed/182...

    I get mine here.

    powdercity.com/products/l-t...

    GABA, is also very relaxing. So much so, I find it incredibly hard to wake up in the morning, I am in such a deep sleep.

    powdercity.com/products/gab...

    I also plan on taking some Low Dose Naltrexone.

    lowdosenaltrexone.org/

    Touted as a miracle cure-all. A lot of MS people swear by it. I am prepared to give it a try. i bought a six month supply.

    So, that's that. All the above works (remyelination notwithstanding), the Modafinil, 4-ap, 4-ap-3-meoh, they mean I can walk half way decently..

    Supposedly, the Biotin and CDP Choline could help my Myelin regenerate (watch this space) and the LDN has all sorts of claims attached to it.

    Stops disease progression, stops fatigue, plenty more. It's cheap and worth a shot. 4.5mg around 9pm is the recommended dose.

    Getting close to midnight now, working tomorrow. I'll finish now.

    Take care, everybody.

  • Hi Monkeybus,

    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.

    Thanks again

    - The HSP WARRIOR! :-)

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