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Old 04-18-2014, 08:47 AM #30
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
Member
 
Join Date: Dec 2006
Posts: 724
15 yr Member
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I'm grateful for this information. I've already been doing some of these supplements because I find they curtail leg and back jerking and spasticity. Because of you, Jack, I switched to D3 from D2 years ago, and upped my dose of D3. The doctor did find D3 deficiency--my pcp's have tested almost all of their patients for d3 deficiency.

I have taken Vitamin E complex with Tocotrinols for years, as well. I found that taking a higher dose of tocotrinols caused increase of spasticity and anxiety, so I went back to the more modest dose. I am a poster child for what Erika brought up, that there can be too much of a good thing, as far as SOME supplements go.

Of course I am one of the absolutely sold out fans of Magnesium. I might be in a nursing home with severed nerves leading to my legs if I did not have Magnesium. I have taken it over 25 years on the advise of a neuro at Scripps, when it was found I could not tolerate any Baclofen or Zanaflex, even very minor doses. The fact that I cannot tolerate B or Z may be related to the fact that I have Porphyria. My Porph interacts with my MS in a subtle way and makes diagnosis almost impossible...neuros disagreed on whether I had MS or Porph, and I gave up l5 or more years ago even trying to figure out that tangle, just doing what I can with supplements and foods to help both MS and Porph. I probably have both, but somehow have not succumbed to either, just go on fighting and defying the Whatevers.

I know my grandson aged 9 will need some help with the Whatevers, but it is hard to deal with parents who insist on going to the more typical pediatricians and will not take the opportunity to go to one who understands more about chemical pathways. I will insinuate D3 into his diet through his mom, who "believes" in vitamins, unlike my son.

I also have Polycythemia Vera and produce too many platelets and red cells, so I have to be careful taking large doses of new things. Not all substances affect PV, so I am usually pretty safe, but must be cautious.

I know that the Swank Diet helps me, has done so for over 25 years. I am beginning to forget when I was dx'd with MS because it was a gradual process, and I had symptoms for decades prior to dx.

I don't think I can take LDN. Demerol is the only pain killer I can take. I can take aspirin but only through the skin. I can take some pain killers, but very selectively--for instance, can take Marcaine but not Lidocaine.

Thanks again!
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"Thanks for this!" says:
ANNagain (04-18-2014), Erika (04-18-2014), jackD (04-19-2014), SallyC (04-18-2014)
 


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