New to Group

A forum for discussing the unique concerns of senior members of the Multiple Sclerosis "Club."

New to Group

Postby QuilterEleanor » Tue Mar 13, 2012 1:04 pm

Hi! I've just been diagnosed with MS in the past couple of months and am about to start on Avonex. I'll be 60 in April.

I had a bout with occipital neuralgia back in the early 1990s which they have now said was an MS relapse, although at that point no testing was done. It was a horrible two-year stretch during which the painkillers I was on had me almost walking into walls!

Last July facial paresthesia showed up as well as a problem walking any distance. Then the round of test after test began with the diagnosis finally being made in late January this year.

One of the things my neuro told me was that she thinks I may be able to come off it in 3 or 4 years as it is her opinion that MS relapses tend to slow down as one ages. Does that sound right?
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Re: New to Group

Postby DougL » Thu Mar 29, 2012 9:09 am

sorry, i have no experience with Avonex but i wanted to say welcome.
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Re: New to Group

Postby ThisIsMA » Sun May 20, 2012 5:45 pm

Hi Eleanor,

Welcome to ThisIsMS! I also have no experience with the Avonex or in my case any of the injectibles. My neurologist tried to sell me on the injectibles but I did my own research and decided not to use them. Amongst other things, I read somewhere that something like 60% of people with MS do not use them.

I was diagnosed three years ago and have done well with high dose vitamin D3 (5,000 IUs a day) after first getting my vitamin D level tested (a simple blood test) and started on 10,000 IUs a day to get my vitamin D level, which was extremely low, up toward the high end of the normal range. There's lots of very hopeful information about vitamin D for MS on this site and on the web. Vitamin D is not just a vitamin, it regulates gene expression and modulates our immune system. There have been some very promising studies of Vitamin D's affect on MS, though more research is needed. And there are indications that most people with MS are vitamin D deficient.

I'm guessing that what your doctor may have been hinting at is that as we age, many or most people with "Relapsing Remitting MS" eventually convert to "Secondary Progressive MS". The injectibles don't work for Secondary Progressive MS, so once you are diagnosed as secondary progressive (if you ever are), you quit taking the injectibles.

In addition to taking Vitamin D3, I also am on a low saturated fat diet. You might want to read up about the Swank Diet, and there are several other MS diets out there too.

Good luck and I totally support everyone's right to do their own research and make their own choices about what strategies to use in fighting this disease. I am not a medical professional. My comments are just my opinions and experiences, not medical advice.

By the way, I am a little younger than you, but I have grey hair, and especially now that I have MS, I definitely feel like a senior citizen. :wink:

M.A.
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Re: New to Group

Postby jimmylegs » Sun May 20, 2012 6:41 pm

MA are you balancing that D3 with minerals? i caused myself a whole lot of trouble a few years back, from just taking high dose D3, with insufficient/poorly-timed calcium, magnesium, and zinc intakes.
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Re: New to Group

Postby ThisIsMA » Sun May 20, 2012 7:01 pm

MA are you balancing that D3 with minerals? i caused myself a whole lot of trouble a few years back, from just taking high dose D3, with insufficient/poorly-timed calcium, magnesium, and zinc intakes.

Hi Jimmylegs,

I do take a calcium - magnesium supplement, though I cut way down on the daily amount when I read that if you take lots of D, you need less calcium in order to get the same bone strengthening effects. I think I read that on the Vitamin D Council website? ...but I could be wrong. And I do nomally take a zinc supplement, though I have to admit I have recently been forgetting to take it (thank you for reminding me, poor memory is one of my MS issues)...

Please tell me about what I should be doing, or point me toward where I can read about it. And I'd be interested in what problems you had that were caused by which amounts of vitamin D and minerals (or lack of minerals).

Thanks!

M.A.
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Re: New to Group

Postby jimmylegs » Mon May 21, 2012 4:46 pm

hi there, here's a post from 07 describing a little of what happened to me:

regimens-f22/topic2489-75.html#p30403

it's a pretty old post and some of the things mentioned are not things i bother with now. there are other things mentioned that you just wouldn't want to do long term (ie taking 200mg zn per day (i had been deficient). i take 50 mg of zinc per day now, balanced with 2mg copper)

i find i need to take plenty of zinc and magnesium when i take d3, but i can't do calcium except for diet. i tried and it gave me muscle spasticity. i noticed that after i corrected my zinc deficiency and got my serum levels up to the top end of the normal range, that my absorption from supplementary d3 TRIPLED.

question: what is the amount of your zinc supp, and is it balanced with copper?
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