CCSVI dead - surely an apology needed from Cheerleader

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: CCSVI dead - surely an apology needed from Cheerleader

Postby NHE » Sun Jan 14, 2018 5:32 am

whyRwehere wrote:Exercise is limited to standing up, but he does have physio for his legs twice a week, and recently for a frozen shoulder, after an injection, and will try a motomed (self pedaling stationary bike), which he hasn't done forever, because it is located at the hospital physio place, and he couldn't use it and is way to expensive to buy for home, which is a pity as they really help with spasticity.

The Motomed devices look nice, but there are much lower cost options available. Please read Tif's thread where she discusses getting a motorized pedaling machine from Amazon for around $90. It can be used for either arms or legs.

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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby whyRwehere » Sun Jan 14, 2018 7:34 am

Thanks Jimmylegs and NHE,
Looks like I have a lot to catch up on. Am definitely going to try and improve the supplements (coQ10 in morning with D And biotine) and the d mag calcium zinc cocktail with the ALA in eve, Jummy).
Now to look at those pedal things,
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Sun Jan 14, 2018 9:12 am

ok ouch.

defs need some mag with the d3 in the am AND another mag dose all by itself at some other time of day.

re evening cocktail that's a multi containing the d mag cal zn, with separate ALA, i take it? without any other detail, the evening d3 combo looks dubious since i'm assuming that's where the mag oxide comes into play.

i presume no copper in the mix either.

do you have any serum nutrient lab test results on file?

as you prepare for your next shop, is there a particular vendor you use? i could check up on what they have available, point you in the right direction value-wise, maybe.
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: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Sun Jan 14, 2018 9:26 am

and as an aside, exercise is important yes - but mag is a critical essential nutrient, of specific relevance to ms patients and spasticity n particular, poorly absorbed as mag oxide, readily depleted via high dose d3 (among other things) AND wayyyyy cheaper than any device even at $90.
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: CCSVI dead - surely an apology needed from Cheerleader

Postby Music » Sun Jan 14, 2018 12:30 pm

I got my motorized pedal machine about 9 or 10 years ago. Saw it in an inflight magazine on a trip back from the U.S. Was at that time about $100.00 Nothing fancy but it has helped along with my Vitamin D3 and Magnesium Bisglycinate. I am in a w/c full-time but can still weight -bear a little for transfers. My legs have never been stiff 24/7 tho.

Take care.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Sun Jan 14, 2018 12:34 pm

hi music what's your d3/mag regimen & timing, iima?
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: CCSVI dead - surely an apology needed from Cheerleader

Postby Music » Sun Jan 14, 2018 8:23 pm

My routine at present:

At breakfast I take 1 Magnesium Bisglycinate (200 mg) and then 2 Vitamin D3’s (1000IU) about 1 – 2 hours later…depending on my morning. At supper I take 3 Vitamin D3 and then 2 hours later 1 more Magnesium Bisglycinate.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Mon Jan 15, 2018 6:19 am

interesting. any reason why you don't take mag right with the d3, as well as separately?
take control of your own health
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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: CCSVI dead - surely an apology needed from Cheerleader

Postby Music » Mon Jan 15, 2018 9:20 am

Sometimes they are taken together. Depends what my morning is like.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Mon Jan 15, 2018 1:12 pm

pharmacist once told me always take mag both with d3, and then take some mag all on its own at a diff time. i've been diligent about following that instruction ever since!
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: CCSVI dead - surely an apology needed from Cheerleader

Postby Music » Mon Jan 15, 2018 4:23 pm

Okay. Thanks!
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