What next

[Jaded]

Evening friends

I know I am not often here - but I do read a lot of what is posted.

A few years ago I thought I might be lucky. I changed my diet - Swank - and have been exercising to keep fit and well. It was all going well.

Then things started to go wrong and the tightness in my knees/legs started and has since just been getting worse. So bad in fact that I can barely walk well. It is distressing as I am sure you all know. So many other things are also going wrong....I feel like my body is breaking down.

I am thinking about HSCT. Before things get so bad. I read about Caroline Wyatt - the British journalist who went to Mexico for treatment. Her description of what she was enduring is not far off where I am. Here is a link http://www.bbc.co.uk/news/entertainment-arts-39092312

But I am apprehensive - it would be such an upheaval. Plus, I have no insurance and live alone - I have to support myself.

Have I tried everything? I can't say. But I have tried a lot of things.

I can't be the only thinking about this...

J.

[jimmylegs]

hi jaded have you had a supplement regimen in place in addition to swank dietary approach? think i saw you were considering high dosing d3. any updates?

[Jaded]

Hi JL

Good to hear from you.

Well I didn't go for the high dose D. I take 5000 IU every other day. And I take many supplements every day - yes.

As I say I haven't tried everything but have been looking at things that help spasticity.

J

[NHE]

As I say I haven't tried everything but have been looking at things that help spasticity.

High dose D3 without adequate magnesium can worsen spasticity. 5000 IU every other day may not sound like "high dose," but please consider my experience. I took 2000 IU every day for a couple of years. I eventually started getting charlie horse like cramps in my calf muscles and in the soles of my feet at night. These were bad enough to wake me cringing in pain. They also occurred even though I was taking 200 mg of magnesium, as magnesium citrate, every day. However, I was taking the magnesium at the same time as the D3. Switching the two around so I took one in the morning and the other in the evening stopped the muscle cramps after just a couple of days. So, it's not just about taking enough magnesium, it's about how you time the two so you can give your body a chance to absorb the magnesium you do take.

You may also wish to read the experiences of member THX1138 at...

Re: Any supplements we should NOT take?
http://www.thisisms.com/forum/natural-a ... ml#p228883

The "Problem" with Vitamin D
http://www.thisisms.com/forum/coimbra-h ... 22618.html

[ElliotB]

Are you taking EFAs?

Have you changed your diet?

[jimmylegs]

hi jaded you may or may not recall that i also had muscle issues with 4K vit d3 per day and badly timed and not enough magnesium. pharmacist said take half the mag with d3 and half away. i cut my d3 dose as well and never went back to 4000UI per day.

i searched the forum and we had fairly detailed chats a couple of years back. i noticed at one time that magnesium dropped right out of your routine, about the same time you were dealing with TN, and that things had improved after reintroducing mag. how's that pain issue been for you lately?

i read as well that you hadn't been having much success getting the dark leafy greens into your diet. any more success in that dept lately?

i recently read or heard something suggesting 1.5 c servings of cooked greens three times per week is a good target for dark leafy greens. i have recently discovered that chopped spinach 'disappears' (as far as tastebuds are concerned) into all kinds of yummy things. it's not like you get a cup and a half that way but every little bit helps. where i am you can buy 300mg blocks of frozen chopped spinach (which i consider 3 servings). i cut the blocks into 9 cubes and figure i can count on 50mg of magnesium per cube.

if you can detail your daily regimen including forms doses and timing of any supplements, there could be a few things to tweak since we last discussed that kind of thing in detail.

[Jaded]

You are all so kind with your responses - thank you.

So easy questions first - yes I take EFAs. Just one tab a day in amongst about 20 or so supps. I haven't changed my diet but sometimes I can't eat veg when my h-pylori plays up. I have resorted to salads which are ok, and I eat cauli and radishes raw. No broccoli - I know it is the h-pylori as broccoli helps stop it. I do try but whenever I cook a load I only manage to eat one tiny bit. I am sure it'll pass but it's not helping matters.

Mag citrate - I never take with D. Maybe I am taking too much D then. And I do sometimes forget the mag - i know I am my own worst enemy. Of all the supplements to forget. The tablets are like horse pills!

I have to take D as I don't go out in the sun (melanoma). So perhaps a smaller dose, less often? Also I have trigeminal neuralgia so I take antivirals hoping these will keep it calm. I did change something - I stopped taking St John's Wort and also GABA recently as I was worried about side effects of SJW and the GABA didn't seem to do much for the spasticity (well, maybe....).

I also take HRT. And modafinil and LDN.

What I take in the morning -

On waking - lysine

After breakfast
Vitamins - C, E
Fish oils, oregano oil, collagen for dodgy knee, probiotics, astaxanthin, zinc, selenium (not ever day), garlic tabs, boswellia resin, cayenne, biotin (small dose!)

magnesium mid morning if i remember - and in the evening before bed. Usually 200g a day.

Before dinner I would take D with K2

After dinner -
B complex, oregano oil. Sometimes I take B12, or folic acid, or B6 or B3 but none of those every day.

Before bed - LDN.

I also take acyclovir in the morning and evening after food.

My diet isn't terrible but I could do with more greens and veg. I eat carbs and sometimes they are white! (pasta). I eat a lot of fish including shellfish. And sometimes chicken.

I don't take calcium nor do I eat dairy or red meat. I have a soya latte every day and drink black or herbal teas.

i swim twice a week and have been trying to strengthen my legs after two recent falls where I damaged my knee. And my ego

I am not sure what you might make of any of the above - any advise would be appreciated. Thank you.

J

[lyndacarol]

I have to take D as I don't go out in the sun (melanoma). So perhaps a smaller dose, less often?

................................

Before dinner I would take D with K2

How many international units (IU) of vitamin D do you take each day?

If you have had the vitamin D blood test called "25-hydroxy D," would you share the test result number with us?

If you have not had a recent vitamin D blood test,GrassrootsHealth (http://www.GrassrootsHealth.net) is offering their at-home finger prick (like diabetics do for their blood sugar levels) vitamin D blood test for the reduced price of $49 in this month of March. (Regular price is $65.)

[Jaded]

Hi LC

The D supps I have are 5000IU each so I've been taking them every other day.

The last D test I had was with my hormone levels - it seems to be the 25 hydroxy - they calls "25 OH vitamin D" which was 109 in April 2016. According to the report it is in the normal range.

Is this normal in the MS scale?

J.

[lyndacarol]

The D supps I have are 5000IU each so I've been taking them every other day.

The last D test I had was with my hormone levels - it seems to be the 25 hydroxy - they calls "25 OH vitamin D" which was 109 in April 2016. According to the report it is in the normal range.

Is this normal in the MS scale?

Safety and immunologic effects of high- vs low-does cholecalciferol in multiple sclerosis (2015)
Elias S Sotirchos et al.
http://www.neurology.org/content/early/ ... 0000002316
http://www.ncbi.nlm.nih.gov/pubmed/26718578

Conclusions: Cholecalciferol supplementation with 10,400 IU daily is safe and tolerable in patients with MS and exhibits in vivo pleiotropic immunomodulatory effects in MS, which include reduction of interleukin-17 production by CD4+ T cells and decreased proportion of effector memory CD4+ T cells with concomitant increase in central memory CD4+ T cells and naive CD4+ T cells.

Classification of evidence: This study provides Class I evidence that cholecalciferol supplementation with 10,400 IU daily is safe and well-tolerated in patients with MS and exhibits in vivo pleiotropic immunomodulatory effects.
Full text: https://www.researchgate.net/publicatio ... _sclerosis

Yes, your “25 OH vitamin D” test is the same as “25-hydroxy D.”

Your test result (109 ng/mL) is good according to the standard range (30-100 ng/mL) recommended by the Institute of Medicine which is used by most labs. In general, MS patients are low or deficient in many nutrients, including vitamin D, magnesium, iron, zinc, and more.

Be aware that Dr. Cicero Galli Coimbra (Brazilian neurologist) and other doctors say that MS patients are vitamin D resistant and require larger amounts. In fact, ThisIsMS has a sub forum devoted to Coimbra’s High Dose Vitamin D Protocol.

In her book, Multiple Sclerosis and (lots of) Vitamin D, Ana Claudia Domene recounts her improvement with Dr. Coimbra’s treatment. On page 17, she writes:
“During the treatment, vitamin D levels can range from 300-4000 ng/mL. This is well above the normal range listed by the laboratories, which is 30-100 ng/mL.”

[ElliotB]

It seems you are doing everything 'right', but perhaps a change in diet is worth a try - maybe one high in EFAs... just a thought.

[jimmylegs]

hi jaded

can you share the brand of mag citrate, so we can see details eg amount of elemental mag in each pill?
at one time i think you had mag glycinate in the mix. any chance you could get some of that again, in a reasonable size powder capsule?

re too much d3, if you are on 5000IU every other day, with magnesium taken sporadically and never at the same time as D3, then i personally would consider that combo an extremely likely suspect where muscle spasms are concerned.

i've recently posted a study showing that high dosing d3 over just 12 weeks reduced recipients' serum magnesium levels. that was in subjects who were already sick in the first place. yes their suboptimal baseline d3 levels improved, but using d3 alone also took a bite out of the patients' already suboptimal baseline mag status.

you might want to consider a little experiment - ie taking a break from the d3 regimen for a week or so, with more diligence re daily magnesium requirements for your weight. if your muscle spasticity is indeed linked to magnesium depletion, you should notice improvements in a couple of days.

i think that if you do notice improvement, then once you go back on d3 that yes a smaller dose would be wise, and that properly combined with cofactors - including magnesium in particular. people with more magnesium in their system do a better job utilizing d3. low mag, low response to d3 from diet or sun. good mag status, much better improvements in serum d3 can be achieved.

can you provide specifics re the antivirals? are these pharma products? if the latter, might be worth looking at whether they are linked to any sort of drug induced nutrient depletion issues. have you already done the same for HRT, modafinil, LDN and acyclovir? i know far less about pharma products than essential nutrients :S

looks like your morning regimen has lots of antiviral goodness in the mix (ie vits A,C,E, plus Se+Zn; not to mention the garlic)
can i ask how much zinc you are taking daily? the form, and whether it is balanced with copper?

re the mag routine. assuming you mean 200 mgs a day so 100 + 100 mag citrate.

if you can figure out a way to include b complex with magnesium, before a meal at some point in your day, for say one week, that could be a good start.

then when you reintroduce d3 (and K2), perhaps at midday? include the second magnesium so d3 never goes in without that cofactor in the mix. and yes probably best to start back in gradually, with a smaller dose of d3.

altogether, that approach might help keep you in line a bit bettter, re muscle spasm troubles.

one thing to consider about magnesium, esp if you are not necessarily getting there with dietary sources, is that we need 7-10 mg per kg body weight per day. so if you can ballpark how much you are achieving with diet, then you know how much to add in supplement form daily (and that is without throwing a bunch of d3 into the equation - doing that will put your magnesium demand on the higher end of the 7-10 spectrum)

personally i try to get plenty of mag in diet and use mag glycinate to top up. if i take one mag glycinate pill, which adds 180 mg of magnesium to my day, i'm fine. if i add another, my large muscles like quads start to feel sluggish like the mag has been a bit too effective as a muscle relaxant.

that's me hope there's something helpful in that mix.

[Jaded]

Thanks LC - seems opinion is divided on high dosing D. I may be doing it wrong!

NHE - thank you - those links are very interesting!

Thanks ElliotB, I will try a little more. I am having mackerel tonight but perhaps I need to broaden what I eat as I am probably stuck in a routine and variety might help.

JL - my bad. It is indeed mag glycinate. The brand is Nutri and the tabs are 100g each.

The idea of a break from D3 sounds good - thanks. I shall try and up the mag dose too. I probably need 300-400g assuming I get little from my diet.

Antiviral - the garlic and the oregano oil which was recommended by the doc I buy LDN from. I found it helped the TN but I also take prescription acyclovir - 400mg twice a day. Just checked the side effects - nothing nice but no spasticity. Nothing in the HRT either. Re modafinil I read that it helped spasticity which is one reason I started taking it again. It also helps my fatigue. The commuting/work is exhausting. It has been stressful and I doubt that has helped!

I take 50mg zinc. I take less C as I eat a lot of fruit so I take about 500mg. 200mg selenium when I take it.

I shall try with other greens. I do eat nuts, bananas and figs which also seem to have mag so I just need to add a bit more. Green stuff!

Thank you - you are all very kind. I shall see how things go and let you know.

J x

[vesta]

Greetings:

Since you report that you have trigeminal neuralgia, consider the work of Dr. Owiesy who treats that disorder with a one hour, one time treatment and that he has had success treating CCSVI MS with a similar treatment. Consider that smooth muscle spasms of the veins are sending back-jets of blood into the brain which is at the origin of your recent symptoms. I have been able to overcome this phenomena with massage, TENS accupressure, other CNS fluid circulation thérapies. (Poor diet causes body tension for me which triggers the CCSVI phenomena.)

http://www.thisisms.com/forum/chronic.. ... 28698.html

Best regards, Vesta

(See my post here Under CCSVI thread "Dr. Owiesy's Superior CCSVI-MS Solution" Feb 12, 2017 For some reason the link isn't working. Thanks

[jimmylegs]

hi jaded good to hear that it's mag glycinate you're using. too bad they are horse pills at only 100mg each though!! :S i will check out that brand. one way to add more mag without a pill (it is mag citrate though): http://naturalvitality.com/natural-calm/

i didn't catch whether your zinc product is balanced with copper. if not, consider that zinc alone can affect copper status
http://neuromuscular.wustl.edu/nother/v ... htm#copper
see where spasticity is noted under clinical syndrome: myelopathy / motor

also zinc and iron compete with each other when taken in supplement form. they both come up slowly when taken together but taking zinc alone typically drives iron levels down and vice versa.

recognizing that your situation is not necessarily status quo re iron and zinc, if you don't have access to monitoring via bloodwork, might be in idea to take a break from 50 mg daily zinc, as well as from d3.

tracking current daily iron and zinc intakes from diet could be a start towards substituting for pricey blood tests!