Spasticity (again) , constipation (again), fatigue (always).

[monkeybus]

It's always the same, much like my posts, but I'll say this again.

About two weeks ago my spasticity was through the roof. Off the scale. And my fatigue, and, and here is the thing, I hadn't been to the toilet for one week.

One week.

That's a record for me. I'm used to the uncomfortable feeling, but the constipation gave me such shocking back pain, close to my right hip.

Hurt so much that whenever I moved a spasm would shoot down my leg. Lucky I was off work.

When I was out and about, I was walking like the tin man. And this is on 4-AP. Fall over when just standing in one place.

The worst fatigue I have ever experienced, and that really is saying something.

I really believed it was game over for me. But I've been there before is the thing. I try and be proactive and I knew it all passes eventually.

I dug out my kilos of vitamins and weighed out some industrial strength doses. This went a long way to taking the edge off my fatigue.

The suppositories did nothing for my constipation so I took a huge dose of laxatives. Thank god that worked, took a few days for the pain to subside though.

Long story short, now my bowel movements are regularised, my spasticity is extremely manageable. Fatigue is tolerable.

But is it the spasticity is in my lower half, bowel, bladder and legs? Cure one, cure all? Did the laxatives free up my bowels and as a knock on effect free up my legs?

Or did they all subside together, nothing to do with the laxatives? I'd have to say that they are all interconnected. The laxatives took the edge off my leg spasticity.

I was reliant on crutches, and even then I was completely shattered after 100 metres or so. Back to walking unaided now, albeit on 4-ap. And I halved my Modafinil usage.

I can almost do a little dance now. Though I doubtless look awful to strangers.

Is this just me? Has anyone else noticed the connection?

[julie_]

Yes, I notice there is a connection. I don't have the constipation you experience but on the occasion that it does, and it usually only lasts one day, I notice that I am not as mobile (relatively speaking, of course) as I am when I'm not constipated. There is a feeling of freedom (to dance?) that comes over me when everything has cleared up! That is, until I eat the wrong thing ...

[tieaknot]

Absolutely a connection! I can never quite pinpoint what triggers it though...and sometimes things will seem to be going along ok then whammo! I have taken some extreme measures in the past to relieve the constipation when I get desperate as it affects everything, like you said.

Also, like you I try to keep my cool and believe it will pass eventually, but it is hard not to panic.

It really is like balancing 100 spinning plates at one time just to keep going day to day!

[monkeybus in reply to tieaknot]

You are bang on. Absolutely spot on with that reply.

And I was never told this by any doctor. And I have been to four neurologists here. Non gave any practical, real-world advice on how to crack on with the grind of working-class existence.

Constipation, a full bladder, a compromised immune system. These all aggravate spasticity.

Eat plenty of fibre and veggies, hydrate, maintain good toilet habits, never resist the urge to go, don't abuse alcohol or other dangerous drugs.

Now my bowels are empty, I can walk, albeit with the help of 4-AP. I am like a different man.

The constipation always passes, but sometimes I honestly believe I will never go to the toilet ever again.

That's it for me, no more. Laxatives and suppositories, all the way from here on in.

I'll aim to go a minimum of three times per week. Purge myself once a week. The doctor gave me some home enema kits.

Someone who I've known for a year or two said she was amazed how well I handle my disease. Calmly getting on with it all. Because it all came on so slowly, this is the only normal I know. Likely the same for a lot of us on this forum.

This is not the life I had planned.

[angelabarwell in reply to monkeybus]

Hi Monkeybus, Are you in the UK? I looked into 4-AP and spoke to my specialist about it. I was told it’s only licensed for the treatment of MS in the UK. I know this is an old post but I’m new to this site so have only just seen it. I have AMN and have been symptomatic for about 5 years.

[monkeybus in reply to angelabarwell]

Oh yes, England. I just buy it online. It's not hard to get hold of. Zero recreational value, you see. There are a few of us here that take it, others it does nothing for. It's part of my life now.

Was your doctor talking about 4-AP, or Ampyra?

I've said plenty of times, for me, 4-AP is the only spasticity medicine that actually works. Baclofen, Gabapentin, et al, they relax your muscles, but at the price of making you tired. I suffer fatigue into the bargain, taking tranquilisers to relax my muscles is madness.

If you look at us all worldwide, we are on such a smorgasbord of meds. Took me a lot of trial and error to get myself half-way fixed up. Three different countries, umpteen doctors, plenty of drugs.

If I'd stopped at the first neurologist, I'd still be taking just Clonazepam and Tizanidine.

[angelabarwell in reply to monkeybus]

Thanks for the reply. I was told that Fampyra and Ampyra were UK names for 4-AP, is this incorrect? I don’t take any prescribed meds, I did try Baclofen but it did nothing, except make me put on weight. I do take a high dose magnesium supplement. I live in Devon and was discharged by my neurologist, he said there was nothing he could do to help me. I wrote to a specialist at National Hospital For Neurology and Neurosurgery in London so I now get to see her once a year which is great. I’ve learnt so much from sites like this and social media. I’m definitely going to look at buying 4-AP online, did you play about with the dosage to get it right? Do you have a reputable onlin supplier that I could use. Thanks for the info 😊

[monkeybus in reply to angelabarwell]

Ampyra is the patented, sustained release, V expensive version, but Fampyra is the name for the chemical, one name for it at any rate.

4-AP is cheap as well, you'd think the NHS would be looking to provide cheap, effective meds. Seems not.

I take 5mg, 20 mins before I have to move, then I keep on repeating if I have to keep moving.

mod4alll.com/zc11/index.php...

There you go, I'll stand by this lot. Ships from London as well.

I only see my neurologist for regular MRI's these days, I don't think there is much they can do for any of us, but I have never had one turn me away like you.

[angelabarwell in reply to monkeybus]

Thanks for that. I’m a little worried as I read it can cause seizures if it’s not the slow release version. Do you get any side effects?

[monkeybus in reply to angelabarwell]

From what I've read, can cause seizures in people with MS, with brain lesions.

And I read up on it for months before I worked up the nerve to take the first capsule.

On all the MS message boards, I couldn't find a report of a single seizure.

[angelabarwell in reply to monkeybus]

Thanks, I’m going for It! I believe the only reason it’s not licensed in the UK for AMN is cost.

[monkeybus in reply to angelabarwell]

What price mobility?

I think spasticity is pretty low priority for the medical establishment. If you aren't dying or in chronic pain, what's the drama?

I took them all, 4-ap, Ampyra, 4-ap-3-meoh, 3,4-diaminopyridine. Shame I can't just get them from a GP, make life a lot easier.

[angelabarwell in reply to monkeybus]

Absolutely! Good luck and thanks for the advice

[Pcutsor]

I takel magnesium every night and it really helps you to go. I usually go every day sometimes twice. Been using it for many years. Before I would go every 4 days. Been blessed with this disease 31 years. Thought they would of found some help by now for us. Probably be dead before they do. Pat

[julie_ in reply to Pcutsor]

How much magnesium do you take? I see people mention they take magnesium but they don't mention the amount.

[monkeybus in reply to julie_]

I was about to ask the same thing. What dose of Magnedium? I'll try anything once.

[Pcutsor in reply to julie_]

Julie, 250 mg. works for me. Sometimes I get the 400 by mistake and it makes things to soft. I take it at night. Pat

[Aaron98 in reply to Pcutsor]

Thanks for the reply, Pat. Have you found there to be a difference between magnesium citrate and magnesium oxide? Which do you take?

[julie_ in reply to Pcutsor]

Oh, interesting. Maybe I ought to take it at night, even though I wasn't taking it for constipation. Thank you, Pat.

[DianeinCape in reply to julie_]

I take Magnesium Malate during the day in pill form (400 mg), and a magnesium powder at night just before bed: 200 mg (1 level tsp). The combined dose of all of these is about 600 mg per day. Since I started this routine last October, I have had a regular BM daily. Sometimes I miss one day but most days I am not constipated. However before I started that routine I had been constipated for years and it was typical for me to go 3 days between bowel movements. That was uncomfortable. I would recommend starting out at a lower level and gradually increasing your dose if you are not getting the results you need. I do remember that I went through a period of diarrhea and had to adjust what I was taking in order to get back to a solid BM. But I think that some supplements I was taking had herbs and were intended to clear toxins from the body so that might have been the cause of loose BM. Also the type of magnesium is important. I take magnesium malate because it supports the muscles and I think it helps minimize the leg stiffness for me. So I get a double benefit from taking it. Some types of magnesium have a lower absorption rate and this makes them act as a laxative. Magnesium oxide is one of those that works like a laxative but doesn't really help your muscles. Here is a link to an article about magnesium oxide from Dr. Mercola. If you haven't heard of him I highly recommend you checkout his website. articles.mercola.com/vitami...

[StevenSims]

Hi,

Constipation definitely affects our spasticity! We are all in the same boat!

Drink plenty?

All the best

[LessThanRich]

Are you trying to say you pooed yourself better?

[monkeybus]

Spot on. Regular bowel and bladder movements keeps my spasticity and fatigue in check (to a certain extent).

Better out than in.

[julie_ in reply to monkeybus]

I really only recently made the connection between bladder / bowel and the spasticity. I'm glad I know now.

The magnesium has not directly helped me with BM but I still take it. My modified paleo diet has been helping but I've been having some constipation once or twice a week in the last few months.

The UK brand Pukka tea, Cleanse, helps! I don't know if it's ok to drink it everyday though; lest your body starts relying on it.

[monkeybus in reply to julie_]

Took me 4 years to reply to you Julie.

What is the deal with this Pukka tea? I see different ones. Which one do you drink? I am a big tea drinker. Earl Grey, Chamomile, green tea. Plenty more.

Fill me in. Which one is yours?

[julie_ in reply to monkeybus]

Haha, hi monkey, it has been a long time! I've stopped drinking Pukka tea! I have a friend in NYC in Chinatown who owns an organic tea shop and I've tried so many! However she has an 'anti stress' tea that is a favorite. Sorry I don't remember the ingredients. I also like holy basil. She also has a milky oolong that's a bestseller. Very nice. I need to replenish these.

[monkeybus in reply to julie_]

Come on Julie, play the game. You have to wait 4 years, then reply.

Still, anti stress. You are talking my language now. Valerian, Ashwagandha, Passionflower, St. John’s wort, hops. They really do work, Gently calm you down.

Gots to be better than pills. Put the kettle on, let me know what you are drinking. I am on a lovely Earl Grey right now.

My wife has plenty of herbal teas, I'll dig through them and see what she's got.

I used to be a regular on this board, been away, now I am planning a comeback. I'll post up some more of my one-man research on our delightful malady.

[DianeinCape]

Hi All, here is a follow up to this thread from a year ago. At that time I recommended Magnesium Malate to help with BM and muscle relaxation. I was taking 600 mg total throughout the day and it helped me to have a bm every morning. It really does make a big improvement in my symptoms when I have a bm daily. I also drink lots of water daily which I think helps the digestive process to move the garbage out of our bodies. Constipation causes toxic build up and that poisons our system hence increased problems.

My current dose of Mag is 500 mg per day in this form:

Magnesium Glycinate by Solaray says it is 400 mg but you take 4 capsules to get dose.

I take 2 caps with breakfast and 1 cap with dinner = 300 mg

Then just before bed I take Magnesium Citrate in a powder form mixed with water.

1 tsp. = 200 mg. I take Vitacost brand and it includes Potassium at 100 mg/tsp.

This powder form helps my body relax and get to sleep.

I also take Malic Acid as a separate pill. I found that Mag Glycinate + Malic Acid (800 mg) worked better for me than the Magnesium Malate did. I take Malic Acid twice/day for a total of 1600 mg.

I also take lots of other vitamins and have done so for 30 years now. I am not taking any prescription drugs. I just started taking CBD oil a week ago and I think it's helping. I will keep you posted with updates on that. I started at a low dose: 3 drops x twice/day.

My sister tells me that romaine lettuce helps to keep her regular. She has had lifelong constipation and is 66 years old. She has AMN, walks with a cane, and her legs are stiff and feet drag on the floor.

Monkeybus I am interested in hearing more about 4-AP. How long have you taken it, what dose do you take, and does this require a prescription? How has it helped you?

Thanks.

[monkeybus]

Hello DianeinCape ,

I used to post about 4ap all the time back in the day. Probably that and Modafinil.

I forget where I first got it from, but they referred me to an "online doctor" for a $50 prescription. Eventually I realised they were just selling prescriptions. What a racket.

I just buy it now mod4alll.com/zc10/index.php...

I don't think it is even recognised as a medicine in the UK anyway. Regardless, 5mg every couple of hours. Depends on how much walking I have to do. I tried them all, extended release, quick release. All the same to me. There are a few of us on here that take it, then again, some people it does nothing for.

[DianeinCape in reply to monkeybus]

Thanks!

[Hillary]

Hi monkey, just had a period of constipation, won’t detail symptoms as you are well aware. But I was wondering if anyone uses a “squatty potty”, I find it amazingly helpful along with laxatives so posting the link.

Squatty Potty Ecco | The Original Bathroom Toilet Stool | 9 Inch | White | Puts Your Body In Optimal Natural Squatting Position amazon.co.uk/dp/B007BISCT0/...

Hope your ok at the moment

Hillary

[julie_]

Something is happening with me right now and I'm wondering if anyone has had this experience. It affects bowel movement ...

I'll make this short. Briefly, I have been suffering from chronic sciatic pain for the last year. I am receiving care from a spine specialist:

On April 30, I had a cortisone injection for chronic sciatic pain. It didn't work.

On July 30, the specialist tried a different approach - a nerve block. This should help to relieve pain and allow me to do physio. I still had pain but I was able to work through it. However, the pain returned.

On October 11, last Friday, I had a 2nd nerve block. I am experiencing much relief, but I need to begin physio and strengthening. I feel very optimistic!

Here is the kicker ...

Did the nerve block this time release something? I have been hit with diarrhea these past two days! I have had bm daily but now I am thinking I have not emptied properly! Could this be the case?

Always something new ...

[fdonaire]

Look about costipation, i got a solution that works, take at least 3 litters of watter dayly and i'm taking dayly a laxative that is not agreed my intestine , peg lax, is the here in Brasil.

[SongStream in reply to fdonaire]

Careful. With Addison’s disease, too much water will flush out sodium and your sodium levels will be lower if you drink a large quantity at one time.