Please share your views on the most promising studies

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Please share your views on the most promising studies

Postby jbro » Thu Jun 11, 2009 1:21 pm

Hello everybody. I am trying to figure out the best study options for me to participate in. Can other forum members please share their views on the most promising research studies?

I have had chronic progressive MS [not sure if primary or secondary] for 23 years. I was turned down by JH for the Revimmune procedure. I just started at a research hospital, Wash U. in StL, and I am not sure of what current studies are the most promising, and whether they are available to people with progressive, rather than R-R MS.

The JH people said Revimmune would not be good for me b/c I am too far along, but I have always wondered if it had more to do with the fact that I am not R-R, which studies seem to prefer.

One other question. I have noticed people here writing about vitamin D. Is that something everybody with MS should be taking or is that to fight the side effects of a study process?

Thank you for sharing your knowledge.

Take care, John
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Postby patientx » Thu Jun 11, 2009 2:21 pm

To answer your question about Vitamin D - there's been much research possibly linking low Vitamin D levels to the development of MS. Many people on this forum (me included) have had their Vitamin D levels tested, and they were found to be low. Now there are some studies looking at the therapeutic value of high doses of Vitamin D. It's generally believed that supplementing with Vitamin D may help prevent MS (a lot of good that does now, I know). Less clear is whether it helps those who already have MS. However, there isn't much to lose by taking some vitamin D everyday; it's inexpensive, and won't cause harm unless it builds up to toxic levels. How much to take is a tough call - the best way to figure this out is to be tested, and see where you fall. It was recommended to me that MS patients take 1000 IU's/day, along with 800 mg. of calcium. Many (me included) are taking levels much higher than this (4x to 6x).

As to the research studies, I don't know too much about the ones for progressive MS. You might want to check out the Drug Pipeline forum here:

http://www.thisisms.com/ftopict-5288.html

However, I would think that the primary consideration would be what Wash. U. has going on.
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Postby peekaboo » Thu Jun 11, 2009 2:21 pm

Hi John

Welcome to TIMS

If you want to participate in a clinical trial and your are either spms or ppms you know that these types are least favored for studies. Fortunately there are a few out there...you can go to clinicaltrials.gov and sort and filter by ms type, drug type, intervention type...you name it.

Depending on the trial...one may need to risk getting the placebo and then no action will be taken against ms...

There is a trial using vitamin D out there but we on TIMS ( and real professionals too) talk about the lack of Vitamn D in folks w/ms. this goes as far as stating folks living furthest from the equator are more likely dx'd with ms.

good luck in your search.
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Postby jbro » Thu Jun 11, 2009 3:01 pm

Patient X and Peekaboo, thank you both for the vit. D info and the trial links and insights.

I just found out that I am being denied the visit with this new Dr. at Wash U. by my primary insurance even though I am enrolled in Medicare, which allows it. Why do they have the authority to do that? Isn't Medicare the payer? Now what? Ay caramba...

Take care John
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Postby peekaboo » Thu Jun 11, 2009 3:08 pm

it all depends on what kind of medicare you have...some have a ppo, mine is an hmo...If your doc is not in their network...tough :(

Also you may need a referral from your pcp first they don't like self referrals...
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Postby jbro » Fri Jun 12, 2009 8:05 am

Thank you again for sharing your insights. Sometimes our health care system bums me out. I think discovering yesterday that my insurer could deny access to this dr. startled me and set me off a little. Now that I've cooled off a little, there has been time to rethink this. It may not be realistic, but maybe I'll look into what studies are available at Wash U, and try to get into the most promising, helpful one.

Do you know, is Medicare good as a primary insurer, for both prescription costs and a wide variety of Drs?
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Postby peekaboo » Sun Jun 14, 2009 8:14 am

My medicare primary insurer was picked by me from a list or providers by county...then there ratings and kinds of service they will supply...i chose an HMO so i didn't have to pay a monthly premium (way lower than retail) although there is a variety of pcp's and specialists the rules are stricker and may have less options.

hope this helps.

Holly
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Postby Sharon » Sun Jun 14, 2009 10:45 am

Medicare is considered the primary insurance. Some doctors accept Medicare payments and some do not - you need to find this out for yourself by asking the doctor. Your supplemental insurance could be an HMO (such as Holly's --- they usually restrict doctor choice by making you stay within a network) or the supplemental could be a PPO. I happen to have a PPO - costs more than the HMO but I am able to go to any doctor in any state as long as the doctor accepts Medicare payments. Medicare will pay approximately 80% of medical costs. The supplement should pay most of the remaining 20% IF you follow their terms (i.e. HMO or PPO)

Good luck
Sharon
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Postby peekaboo » Sun Jun 14, 2009 10:59 am

thanks Sharon...you said it better than me and your spelling/typing well...way much better :D
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Postby jbro » Sun Jun 14, 2009 1:28 pm

Thank you both, Holly and Sharon. I was startled when my insurer still had the ability to deny me access to the doctor I had chosen and made an appt. to see. I will consider making Medicare my primary insurer now.

Take care, John
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Postby Sharon » Sun Jun 14, 2009 3:25 pm

John you wrote
I will consider making Medicare my primary insurer now.


If you sign up for Medicare it is always considered the primary
Sharon
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Postby jbro » Sun Jun 14, 2009 10:22 pm

Sharon
If you sign up for Medicare it is always considered the primary


Then I do not understand, how did my other insurance deny my ability to select a doctor? Why do they have any power at all?

John
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Postby MaggieMae » Mon Jun 15, 2009 7:02 am

My husband has Medicare, but because I work, my insurance (he is on my insurance also) is considered his primary and his medicare is secondary.
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Postby peekaboo » Mon Jun 15, 2009 7:32 am

If you are on your wife's insurance then maggiemae has a good point..If that is not the case. then i suspect that you have a medicare advantage policy and it being HMO like mine. I got approved after the fact. BAd headache while visiting my sister in CA :wink:
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Postby jbro » Mon Jun 15, 2009 7:41 am

Thanks for your input, Maggie and Holly. That is my situation too, w/coverage thru my wife's work. I'm guessing that in this situation sometimes your primary can limit which Dr. you can see?

John
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