1st movement after waking triggers violent muscle spasms

[THX1138]

Are you on a vegan/vegetarian diet?

Regards,

No, never have been.

[Scott1]

Hi,

The comment you made about eating bringing some relief and how long it takes to get the meals down did make me sit up. Can you elaborate on what seems to help and what your diet usually consists of? Are you on any medication?

[THX1138]

omg pegan is actually a real thing... i had no idea

That is vegan not pegan

[jimmylegs]

nope! pegan - look it up

[THX1138]

Hi,

The comment you made about eating bringing some relief and how long it takes to get the meals down did make me sit up. Can you elaborate on what seems to help and what your diet usually consists of? Are you on any medication?

I always have a tough time with these questions about what and how I eat but I'll give it a try:
For the past 3 months I've been on the Paleo AIP eating plan. I've been following it strictly except for not eating as many vegetables as it recommends. So, a lot of meat and a moderate amount of vegetables. I would eat more vegetables, but I need to make sure I get enough calories so I'm not cold (mainly my hands) and as we know vegetables are very low in calories so I usually opt for the higher-calorie foods.
It doesn't really bother me much for my hands to feel cold but my hands being cold goes right along with greater spasticity and brain fog and all around doing worse. So my hands being cold and sometimes my feet being cold of course doesn't cause me to do worse but it's a symptom that goes along with me doing worse. Also if I go to bed feeling cool at all when I wake, spasticity will be much worse. I also might have trouble getting to sleep.
Yeah I don't have a good handle on my eating. I have improved but I eat very erratically and often don't get quite enough calories during the day (2000).

I suppose maybe I've been on the Paleo AIP too long but I haven't seen improvent yet. After the first month I kept on going and haven't reintroduced any foods until very recently. Yesterday I quit the Paleo AIP eating plan with the exception of eating dairy and gluten.

I take mesalamine for the colitis. Up until three days ago I took Mirtazapine for depression to stimulate my appetite.

[jimmylegs]

Evaluation of Serum Trace Element Levels and Superoxide Dismutase Activity in Patients with Inflammatory Bowel Disease: Translating Basic Research into Clinical Application (2017)
https://link.springer.com/article/10.10 ... 016-0891-0
"Decreased levels of zinc and SOD activity are associated with increased inflammatory processes indicating inappropriate antioxidant system in patients with IBD."

Efficacy of zinc–carnosine chelate compound, Polaprezinc, enemas in patients with ulcerative colitis
http://www.tandfonline.com/doi/abs/10.3 ... 013.863963
"Clinical response or remission was significantly better in the PZ group (71%) than in the placebo group (10%)."

Association of serum zinc levels with liver function and survival in patients awaiting liver transplantation
https://link.springer.com/article/10.10 ... 015-1334-7

Zinc as an Appetite Stimulator - The Possible Role of Zinc in the Progression of Diseases Such as Cachexia and Sarcopenia
http://www.ingentaconnect.com/content/b ... 3/art00008

might be time to see what could happen if you sort out that borderline zinc deficiency situation, ya?

[Scott1]

Hi,

Ok. Lets start with two elements; spasticity and brain fog (I'll call that fatigue).

Without becoming technical, spasticity is largely driven by calcium from a store in each cell signalling strands of muscle fibres called Actin and Myosin to bind to each other without any countermanding signal occuring.
In pictures it would look like this - (just let it wash over you, there's no test at the end).

What makes that contraction reaction unwind is ATP. If it doesn't happen you will have tight muscles. There's a couple of ways to influence muscle tightness. The common use of Baclofen is to try to slow how fast potassium leaves a cell and hence slow how fast sodium signals calcium to be released. Magnesium can block calcium release so muscles don't tighten as much. Alcohol does the same thing hence people say a drink "relaxes" them (but it does other things). A drug I use called Dantrium does it very effectively but it is so effective you can feel worse if your muscles are actually weak.

The third obvious way is to ensure ATP is readily available which is why I take CoQ10 (large doses), aceytl-l-carnitine and magnesium. You can't store ATP. If you stopped making it you would be dead in 10 heartbeats. It's made on demand in the mitochondria very rapidly but if it breaks down to ADP or AMP or just purines you will struggle to supply it as fast as you demand it hence brain fog and fatigue.

The fact you have brain fog/fatigue points points to a) inflammation and b) limited ability to access ATP. Again, I would take the items I mentioned above but also check for causes of inflammation such as EBV, mycoplasma, rickettsia etc. If you have them, treat them. Inflammation promotes free radicals and they can disable all sorts of functions.

If you want to check your ATP level, then check your uric acid level (not urea) as that's the last step in purine metabolism (what ATP would break down into). If its low, you have a problem. If its high you'd have gout!

The cold in your hands and feet suggest trouble vasodilating. Nitric Oxide is the primary dilating factor. That's derived from L-arginine and that comes via l-citruline in a cycle that repeats called arginine metabolism. Surprise, surprise it's an ATP dependent pathway. You can try either as a powder in a drink but they are not the greatest taste. Dark green leafy vegetables and beetroot will also help dilation by triggering something called the nitrite/nitrate pathway. Blood vessel constriction/relaxation is controlled by the autonomic immune system. Sometimes its hard to influence,

So I'd try CoQ10 in large doses (ideally in a Vit E oil based capsule) 2x2000mg of aceytl-l-carntine and some magnesium for the tightness. Then I would add massage and gentle exercise (like Pilates) to strengthen and tone muscles. You could extending that to dry needling to break up the tight fascia but see where some exercise takes you first. You can trying any or all of the powders and foodstuffs that work for vasodilation and see what happens.

It sounds to me from what you describe that there is some inflammation still happening. You didn't mention a probiotic but I'd view it as essential. You may recall that I take Valacyclovir as an antiviral and I only relapsed when I stopped. That is still a strongly preferred option for me. Now my neurologist just writes the script but doesn't ask why any more!

This is not an exhaustive explanation but I hope it triggers something for you.

Regards,

[THX1138]

You didn't mention a probiotic but I'd view it as essential.

Lee Swanson Signature Line Probiotic 1-3 x day

You can trying any or all of the powders and foodstuffs that work for vasodilation and see what happens.

The strong niacin flush does wonders for me while it lasts. My muscles relax, my vision gets better, I become light and quick feeling, moving and thinking. I basically feel like a new person during the niacin flush. I've written several posts on my experience with niacin.

The cold in your hands and feet suggest trouble vasodilating.

By late evening, if I've eaten enough during the day and night, my cold hands become warm, slightly tingly and the blood veins stick out nicely. It is also late in the evening, if I've eaten enough, that my walking gets much better with much less spasticity. It is then that I can step, raising my feet about 8 to 10 inches in the air, whereas during most of the day I can't pick my feet up much at all, whereas during the day, my right foot will sometimes drag because of foot drop or whatever. But when that happens I know that I'm more dehydrated and, if I drink some water, it often goes away.
Also throughout the day, to make sure I get some movement, I have a timer that sounds every 5 to 10 minutes at which time I stand up. So I've been able to notice the spasticity in my hips/legs and how it changes. One thing I've noticed is that after I eat the tightness in my muscles gets worse; when does happens hours think of dehydration and low blood volume.

[jimmylegs]

^^ re ATP - i just gotta be me:

"The magnesium ATP complex is the sole biologically active form of ATP." https://web.archive.org/web/20071225194 ... ?magnesium

" Mg2+ plays a key role in the regulation of functions of mitochondria, including the control of their volume, composition of ions and ATP production"
http://bit.ly/2ynrFBx

[THX1138]

JL, did you ever find out if the strength of the niacin flush correlates with ionized magnesium concentrations in the blood ? I didn't find the research. The relationship that I had mentioned some time ago was that the stronger the niacin flush, the lower the free fatty acid level, the higher the magnesium ion level in the blood. That is how I remembered it to be, but unfortunately I couldn't find the articles I had read.

These people are not embarrassed, but instead, they are people having a niacin flush. The only mistake they make is they're not smiling


The Mg glycinate has been ordered. I ate a can of sardines 2 days ago and bought some more.
I have Albion chelated zinc 30 mg per capsule. I think I will take two or three of these per day and get some Albion chelated copper 2 mg and take that also. So that works out to either a 30 to 1 or a 45 - 1 zinc to copper ratio.

[jimmylegs]

heya, don't think so but can take a look. the search for appropriate research citations isn't working out so well atm

re smilies haha you can make your own happy red niacin smiley here https://www.pizap.com/pizap-app.php?initialstate=emoji
your new TiMS avatar??

yay re mag glycinate. wish i could love sardines. i remember eating them docilely when given them as a toddler. i really should try again :'(

re zinc when my zinc was 8.6 (aka 56) the doc said take 100 mg per day for one month.
re your planned regimen, you probably know not to try to do 60mg or 90mg all in one shot, and you probably also know not to try even 30 on an empty stomach.

while 40 mg is the daily upper limit for zinc over the long term, in the short term higher *divided* doses are okay. your planned cu zn intake ratio looks ok too. i've been used to 50:2 but right now am trying out 30mg zn w 0.3mg cu. hasn't killed me yet!

could be good to try your proposed approach from now to oct 20, then have serum cu and zn levels checked. ie, rock on, padawan.

side note which you may also recall: my worst brain fog ever (major difficulties driving as a result) disappeared forever after correcting my deficient zinc levels. it's been 10 yrs now, since i had a brain that messed up. at the same time as zinc was corrected, my serum uric acid levels bounced up out of the ms zone for the first time ever since i had started asking for the test. bet if i'd had ammonia levels tested at the time, they would have been through the roof!

related:
Current concepts in the pathogenesis of urea cycle disorders
https://www.ncbi.nlm.nih.gov/pubmed/20227314
"The common feature of urea cycle diseases (UCD) is a defect in ammonium elimination in liver, leading to hyperammonemia. This excess of circulating ammonium eventually reaches the central nervous system, where the main toxic effects of ammonium occur. These are reversible or irreversible, depending on the age of onset as well as the duration and the level of ammonium exposure... Better understanding the pathophysiology of ammonium toxicity to the brain under UCD will allow the development of new strategies for neuroprotection."

ORAL ZINC SUPPLEMENTATION IMPROVES HEPATIC ENCEPHALOPATHY
https://www.ncbi.nlm.nih.gov/pubmed/6147551
"Short-term oral zinc supplementation probably improved hepatic encephalopathy by correcting the zinc deficiency that compromises conversion of ammonia to urea."

[Scott1]

Hi,

Magnesium and ATP is one of the great love affairs of life. ATP has 4 negatively charged oxygen molecules and 2 of them bind to the magnesium. They are hopelessly attracted to each other. Hence ATP goes from -4 charge to -2 when magnesium gets involved. It's a good thing.

I'd at least try the CoQ10+ aceytl-l-carnitine as well as what you're doing. You will need big doses of CoQ10. I take 750mg a night. I don't think much would happen if you took less than 300mg.

If you avoid gluten do those muscles you mentioned tighten? Did you mean in the torso or legs? I find gluten makes me feel tighter in the torso after I consume it. That's probably the psoas as much as the general area. The ability to lift your leg comes more from the psoas muscle than the hip flexors or leg muscles. That muscle is hard to stretch and strengthen but it can be done. Perhaps you are a bit like me and gluten is really not your friend.

Regards,

[THX1138]

If you avoid gluten do those muscles you mentioned tighten? Did you mean in the torso or legs? I

Yes. they still tighten, both the legs and the hips, frequently the hips are so tight that I can't even stand up straight.
I've been on the Paleo AIP eating plan for 3 months 'till the other day. So no gluten during that time. Although I did take a few supplements that had cellulose. I don't know if that could give me trouble or not but it was one of the things you're supposed to avoid when on the AIP. I haven't noticed any improvements while being on the AIP. That's not to say that it didn't reduce inflammation and I didn't notice it.

I find gluten makes me feel tighter in the torso after I consume it.

My muscles usually get tighter after I eat. I stand up about every 5 to 10 minutes when the alarm rings so I've been able to notice how my spasticity changes throughout the day.

[THX1138]

wish i could love sardines. i remember eating them docilely when given them as a toddler. i really should try again :'(

JL have you tried King Oscar brisling sardines in the red package with the guy on the front? They are a very small and non offensive.

side note which you may also recall: my worst brain fog ever (major difficulties driving as a result) disappeared forever after correcting my deficient zinc levels. it's been 10 yrs now, since i had a brain that messed up. at the same time as zinc was corrected, my serum uric acid levels bounced up out of the ms zone for the first time ever since i had started asking for the test. bet if i'd had ammonia levels tested at the time, they would have been through the roof!

That's very exciting indeed

[jimmylegs]

ha i shall keep an eye open for king oscar sardines.
i hope you can get both mag and zinc levels up *and* feel results