Progressive MS symptoms leading up to not being able to walk

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Progressive MS symptoms leading up to not being able to walk

Postby vender » Mon Sep 10, 2018 2:01 pm

Progressive MS symptoms leading up to not being able to walk.

Hello I was wondering if for those who don’t walk anymore. Anything you can remember leading up to no longer walking? Extreme pain, tightness in the legs/calf? Extreme fatigue beyond MS tired?
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Re: Progressive MS symptoms leading up to not being able to

Postby jimmylegs » Mon Sep 10, 2018 6:16 pm

my friend has been in agony recently, what with being in the taxol phase of the chemo. it is sucking the magnesium right out of her (a documented effect).
i sent her related research papers today, and she said she had actually tried a magnesium bath last eve to her much needed relief.
i hope she will ask her docs if they will green light an increase her daily supplemental mag for these last few rounds. why suffer when this kind of answer is right there!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Progressive MS symptoms leading up to not being able to

Postby vender » Tue Sep 11, 2018 5:04 am

FYI. I started taking 800mg of GNC super magnesium. Is that enough? I’m trying anything. I need energy!! Cocaine? Meth? Speed? I no longer care as this is not living. “I would do anything to feel like shit again!”
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Re: Progressive MS symptoms leading up to not being able to

Postby tzootsi » Tue Sep 11, 2018 5:40 am

Two things that might help - Dr Coimbra's vitamin D protocol, the high dose biotin protocol. Plenty of info on both if you google them.
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Re: Progressive MS symptoms leading up to not being able to

Postby Scott1 » Tue Sep 11, 2018 7:22 am

Hi,

In 2014, I had a very bad attack. Two chambers of my heart stopped beating so I spent some time in cardiology before they even attempted to look at my MS.
It wasn't a heart attack,I just ran out of energy.
After 10 days the neurologist said I had to go to rehab because I could no longer walk . He was right but I got out of bed and practiced balancing, then started walking slowly but unaided. I was endlessly offered wheelchairs and told to rest but I didn't think it was a good idea. Now I'm much better and most people don't even notice I have anything but an occasional limp.
I know its accepted to say progressive MS is an irreversible process but I think it doesn't have to be like that.

What I think you're really wanting to do is to overcome the fatigue .

How I dealt with that was taking the highest grade brand of Coenzyme Q10 in much higher doses than generally mentioned . I started at a 150mg tablet and increased it every 2 days till I got to 750mg. That's where I have been for four years now. I also took 2x2000mg of aceytl-l-carnitine twice daily.

I took all the CoQ10 before bed because sleep is supposed to be the downtime when the body recovers. Others would spread it over the day but I don't.

The brand of CoQ10 needs to be in a gel capsule with d-alpha-tocopherol. (like this one https://www.bioceuticals.com.au/product ... xcel-150mg )
That's a practitioner brand in Australia so only some chemists stock it. Don't just grab any product of the shelf or you may as well eat lollies.

Just taking those two things will give you support for the electron transport chain which is critical to creating energy. The d-alpha-tocopherol is a form of vitamin E so its a powerful antioxidant that's synergistic with the CoQ10.

The magnesium is also helpful as it complements the effects of the CoQ10 and carnitine.

Try this for a while and try to keep moving.

Regards,
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Re: Progressive MS symptoms leading up to not being able to

Postby vender » Tue Sep 11, 2018 7:58 am

I have always been able to push through and keep going. This is a new form of fatigue that literally takes me out. I had thought that my legs couldn't get any worse I was wrong. The pain is truly unbearable and I have a very high tolerance for pain. I take no pain medications and this is getting to be too much. At this point I will try anything. I usually get a three day infusion of Solu-Medrol but they are holding it off until I get my ocrevus in October. Why I don't know it seems pretty obvious to me that Ocrevus is not working.
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Re: Progressive MS symptoms leading up to not being able to

Postby jimmylegs » Tue Sep 11, 2018 9:06 am

hi glad to hear you started on something at least! now to get things really working...

re magnesium i took a look at the details for the GNC product. https://www.gnc.com/vitamins_supplements/136912.html
normally 800mg should be enough (assuming dose is divided through the day and levels have not been excessively depleted secondary to high dose d3)
i'm afraid the first two forms listed in the ingredients are outside my personal xp. i'm used to the quickest dirtiest off the shelf cheapo product being mag oxide. it worked for me within days even though it's by no means the best option.

the second on in the GNC product, magnesium lactate is, i read, the magnesium salt of lactic acid. i am by no means an expert but while mag lactate likely makes sense in an intense athletic context, i am far from sure it's ideal for spasticity.

the only mag forms with which i have had personal experience and any success, even if only partial, were oxide, citrate, and glycinate (and kind of bisglycinate, but it was a bit strong for me - might be perfect for you).

oxide works somewhat in terms of absorption, but is insoluble inorganic with a ready tendency to loosen stools, with decidedly unsexy results.

citrate is somewhat better in terms of absorption, and is slightly less laxative than oxide,
re the GNC product, citrate is the very last of three ingredients, and it's not clear from the label whether it's a third of each type, or what.

i have a relatively expensive magnesium combo which sits unused on the shelf. $45, by a company i really like, and while mag glycinate is the first of four ingredients, when i read up on the others (aspartate, malate, and ascorbate) i was not impressed. and so it gathers dust for the time being.

magnesium glycinate does what i need and does it well for under $20 a bottle. the only time i ever took enough mag glycinate to cause a laxative side effect, was when i had a splitting headache that was related to an infection, and which really should have been taken to emergency.

magnesium is also critical for energy levels. lots of related info out there, eg
https://en.wikipedia.org/wiki/Magnesium ... ity_of_ATP

i hope you can find an alternative source of mag, with at least some if not all the content being magnesium glycinate.

final thought on magnesium - when i started working on mine, my status was *really bad*. i thought i might never be able to skip a day again without feeling it right away. skip a few days and things could get pretty dire. in my case, it took a very very long time to gradually rebuild tissue stores.

i hope you will not give up - best case scenario, that you can get your serum magnesium level tested so that you know whether your actions are taking effect. i know that a former TiMS member had taken 400 mg of magnesium glycinate a day for a year and still had serum mag levels in the toilet. he had not stopped taking 70000 IU of d3 per week (10K per day) throughout. his regimen was not sufficient to counteract depletion from the d3.

so with that underscored, it might also be well worth taking a solid break from the weekly d3 megadose. (as opposed to adding more... wow :? )

re potentially depleted d3 cofactors, where the muscles are concerned it might be worth looking at potassium in particular. can you post a recent potassium level from bloodwork?
if it's at all on the low side, the highest dose potassium product i have ever seen was 600mg - over the counter not off the shelf. the daily value (applies to age 4 and up) for potassium is 4700mg so yeah lots of room to load up on 600mg tablets through the day, if the bloodwork ends up looking like that could be a reasonable option.

in general for muscles and for energy, the b vitamins are in the mix as well.

also re energy i specifically switched from my fave company's regular 3 a day multi, in order to get a product with some iron. do you have serum ferritin results on file? anything else from a general iron panel?

overall, for both b-vits, iron and other essential micronutrient cofactors, please consider a high quality general multivitamin / multimineral
ideally a 3-a-day product for active individuals - i use one something like this https://www.progressivenutritional.com/ ... ctive-men/

even in light of my comments above re GNC mag, multi products for active ppl will have more nutritional bang for the buck, with less risk of imbalance from going too intense on any one thing)

also to help combat inflammation, you might consider adding a high potency fish oil product. (i've seen one a day and two a day fish oils, in addition to liquids etc)

together, these various ingredients will help support your body's own natural endogenous synthesis of CoQ10, to which you can of course consider adding an extra supplement if and as needed. i personally like to ensure my body has all the essential ingredients on board first, so that my systems are at least equipped and hopefully fired up to at least do some of the work.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Progressive MS symptoms leading up to not being able to

Postby Anonymoose » Tue Sep 11, 2018 11:06 am

vender wrote:I have always been able to push through and keep going. This is a new form of fatigue that literally takes me out. I had thought that my legs couldn't get any worse I was wrong. The pain is truly unbearable and I have a very high tolerance for pain. I take no pain medications and this is getting to be too much. At this point I will try anything. I usually get a three day infusion of Solu-Medrol but they are holding it off until I get my ocrevus in October. Why I don't know it seems pretty obvious to me that Ocrevus is not working.


Hi Vender,

I’m not sure this applies to ocrevus as it’s mechanism of action may not be exactly the same as rituxan’s BUT I know vitamin d is required for Rituxan to be effective and I know vitamin D can knock out achy joints and bone pain for me sometimes. Maybe you’ve been depleted of vitamin d? I doubt ocrevus has a lot of data out there since it’s so new to market so maybe you’ll want to try to see if Rituxan stuff applies since they’re both cd20 mabs. There are other micronutrients involved with Rituxan too. You’ll have to read through a lot to find the Rituxan related info but this was the best source I could find on it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808891/

Hope that helps.

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Re: Progressive MS symptoms leading up to not being able to

Postby jimmylegs » Tue Sep 11, 2018 12:41 pm

d3 50,000 IU per week, i believe. potential/likely secondary mag depletion in the picture.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Progressive MS symptoms leading up to not being able to

Postby Anonymoose » Tue Sep 11, 2018 1:51 pm

jimmylegs wrote:d3 50,000 IU per week, i believe. potential/likely secondary mag depletion in the picture.


Maybe some of the other Rituxan-related things apply? I’ve a list w/o linked sources. Magnesium and potassium for sure. Taurine, copper, and iron prolly.

Also, Rituxan is now flagged for possible hep b reactivation...hep b can cause fatigue, aches, neuropathy, etc. I think ocrevus would carry the same risk.
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Re: Progressive MS symptoms leading up to not being able to

Postby Snoopy » Tue Sep 11, 2018 3:20 pm

Vender, are you aware a side effect of Ocrevus is fatigue, body aches and pains, plus more?

https://www.drugs.com/sfx/ocrevus-side-effects.html

https://www.ocrevus.com/patient/taking- ... ction.html

Unfortunately, sometimes the treatments and symptom management medications can cause symptoms similar to MS or make existing symptoms worse. If you are taking any symptoms medications and or just Ocrevus, that should be considered for worsening symptoms as well as an exacerbation. In the past there have been MS patients who believed a MS treatment made their MS worse. There is no guarantee the treatments for MS will slow progression or help with symptoms. This disease has no guarantees.

As far as your question ~
I was wondering if for those who don’t walk anymore.


Quite simply ~ mobility problems/loss of mobility is due to the disruption of nerve signals which causes all of the symptoms related to MS. I have struggled with mobility for 34 years. I have always had spinal cord lesions which are well know for causing mobility problems. My mobility has never been about fatigue although that can add to my difficulty walking. Mobility problems, for me, has always been due to bi-lateral leg weakness and my CNS not being able to communicate correctly. Exercise and Physical Therapy has been the only thing that has kept me walking. If not for my continued ability to keep going I would have been in a wheelchair from the beginning. I have had multiple times I have had to try and regain my mobility and/or learn to walk again.
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Re: Progressive MS symptoms leading up to not being able to

Postby Scott1 » Tue Sep 11, 2018 3:30 pm

Hi,

When you say the pain in the legs in intolerable, can you describe it? I've had sharp pain round the hips, throbbing pain in the hamstrings, toes that curl and tightness in the quads to name a few types. Below the knee can be as bad as above.

The best prescribed medication for the tightness, for me, was Dantrium. To be clear, most people hate it because they feel a lot less stable after a week. The reason is the tightness you develop changes your gait and that affects the whole body. The Dantrium releases the tightness but that exposes how weak your underlying strength has become. You need to exercise eccentrically to overcome that (i.e pilates not weights). Getting the strength back is about functional movement not load bearing stuff.
The pain receptors in your legs correlate with the fascia in your muscles rather than the muscles themselves. When the tightness develops your fascia thickens at points as a response to the strain. That's normal but not helpful. An example of that action is how a baby's knees develop. When they're born there is barely a knee but as the wriggle, then crawl then walk the fascia builds structural strength around the knee. You don't want this process randomly developing in other parts because the tightness will trigger the pain receptors. You can break the tightness by combining dry needling, massage and eccentric movement. It will require repetition and work but it really got me back to a normal relatively painless gait.

I don't take any standard MS drug at all because of the side effects.

Regards
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