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Getting the Neurologist to agree on OMS?

PostPosted: Mon May 20, 2013 2:22 pm
by KT
Our Neurologist is a WONDERFUL positive woman, however, she is definately all for the medication for MS ASAP. My husband is newly diagnosed and we have discussed with her the medication list she gave us to review and "choose one" from and told her we would like to hold off on medication for now and watch the MRI's for progression while we make changes to lifestyle and diet. She, like many Doctors I am sure, tend to lean towards the fact that it doesnt hurt to make the dietary and lifestyle changes, but it doesn't "help" MS either. She has told us that studies show those that choose to forgo meds, even when relapse free their brain shrinks over time. This is all so new to us, I wonder if we are making the right decision not to jump into the medications, but they seem worse than trying this for the time being. If we take meds and then have a repeat MRI in a few months and there is no progression, how do we know if the meds did that or if it would have been the same without? My husband has 3 lesions currently, we are early in the "game' here as I see it. Does anyone out there think we are doing ourselves harm by NOT taking meds. When we DO decide it's time.. Copaxone seems the safest as far as I can tell. Our Dr is pushing Tecfidera but it is so new and I know how the pharma companies work, they offer incentives to physicians to write write write their scripts... copaxone at least has been around for many years, we wont feel as much like a lab rat. I dont even know what to expect of the cost of the medications and how much the insurance will even cover, we have a high deductible plan.. This is very overwhelming.. repeat MRI is in July... any thoughts? Can we sway our Dr to see the benefits and the research to how diet and lifestyle seem to directly co-ordinate to ms? Researching has opened my eyes to how obvious it seems to go hand in hand! Chemically created medication may not be the answer, it may lie in nature :) How has your experience been with physicians??? Of course, eventually if there is progression we may decide that yes, it is time... but for now...we'd like to hold off on putting harmful chemicals into his body

Re: Getting the Neurologist to agree on OMS?

PostPosted: Mon May 20, 2013 4:57 pm
by veg
Hi
Doing the full OMS approach will be a massive help to stabilise your husband's MS, but it can take 3-5 years to reach that point but then you are so fresh on your journey that you might feel change sooner. Because of this an MRI in 6 months time might be to soon to see such change you are after visually and as discussed very recently in a thread seeing lesions on a scan may still be unreflective of how you feel as you could be feeling great and they may be just there.
Get vit d level checked now.
Neorologist and Drs don't have to agree I use mine to support me like for blood tests but I am OK with them not advocating what I do.
Drugs are as personal decision and also back lash research is another angle to read up on as some cause MS to rebound badly when stopping and others do nothing to stop progression only tinker on relapse rate.

Re: Getting the Neurologist to agree on OMS?

PostPosted: Mon May 20, 2013 10:49 pm
by KT
thanks for the backlash info, I will look into that! It sounds like trial and error with the meds, its all so random! I think BECAUSE we chose no meds is why they want to repeat the MRI in 3-4 months of the first and then in 6 month increments we were told. so I am understanding they will be a routine thing. Just hoping for no change and no symptom flare ups at the first marker and into the future of course! :)

Vitamin D script for labwork is on its way from the neurologist in the mail and we are already taking a Vit D3 (1000) plus Omega 3 (900) supplement. 3 a day right now

I am wondering if my neuro knows about Dr J? I am going to show her this book next visit and see if it is any interest of her to check out his view.. she may not agree with it but may like to know about it if she does not already! She is REALLY sweet and not at all confrontational. she has her suggestions but i is our decision on how we move forward so far.

Karin

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 4:21 am
by Kashu
Let us know how you go with the Neurologist and tests Karin.

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 6:41 am
by veg
hi
Vit d of 1000 per day is too low. Have a look at the vit d page on this site :-) unless you live somewhere very sunny.
Oh and add The China Study to your reading list.

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 9:56 am
by Kashu
my guess is the Omega 3 is too low too unless you are having lots of oily fish and flaxseed oil as well.

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 12:39 pm
by KT
Im still in the "figuring out" stage of how much we need. Currently he is taking 3 tablets a day that contain 1000 IU each of D and 900 mg each of omega. So 3000 IU daily vit d and 2700 mg omega 3. We are aiting on script for bloodwork to check D level. We are in the US and I understand IU is calculated differently here? I have to figure this out... what he would actually need. I'm curious what his levels are and will try to up them to 150 when we figure that all out. The script should have been to us a couple weeks ago but a miscommunication in the neurologists office held that up! I predict now that he has been taking suppliments for 3 weeks we wont know what his actual starting level was, but at least I'll know what we need to do to reach 150+

I bought Flaxseed, thay arent too fun to eat by the handfull, I thought he might like them like sunflower seeds, but, not so much! I know there is oil and I will get that but in the mean time, any suggestions for the seeds? Do you sprinkle them in food? I hate to waste them

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 12:52 pm
by KT
veg wrote: hi
Vit d of 1000 per day is too low. Have a look at the vit d page on this site :-) unless you live somewhere very sunny.
Oh and add The China Study to your reading list.



Veg, you are the 3rd person to suggest the China Study! I will go see if it is in our library, if not I'll order it. I am 2/3 of the way through OMS, need to finish this then I will start another!

We live in the US at the New Jersey Shore! VERY sunny here this time of year and we own a boatyard so he is outdoors all day shirtless, but doesn't own a single pair of shorts! Not since he was 16, now 46, have his legs seen the sun! No joke, he doesnt wear them, his legs would be blistered burned if they were exposed he would have to ease them into it! lol He does cover up all winter though, flannels and coveralls, and always a ball cap, his face and hands/forearms are all that is exposed november till about this time of year!

He mentioned ysterday that he hasn't sunburned at all this year yet. Usually this time of year when the shirt comes off, he will get color initially, not burn BAD, but noticable color, and he hasn't got that yet. We had days the last few weeks in the 80's and we would have expected him to get some color. Is this a result of taking the vitamin D? any one else experience this? Just curious...

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 3:21 pm
by veg
Flax seeds also know as linseeds you sprinkle on say cereal base or soup and just eat. Never by the handful on own, yuk.
They help with gut transfer and eaten like that very little else. Great for the bowels but must have a drink/water with them.
Flaxseed oil however if fresh pressed is something to add, see flaxseed oil/fishoil FAQ

Re: Getting the Neurologist to agree on OMS?

PostPosted: Tue May 21, 2013 6:18 pm
by Kashu
You are doing the right thing by testing the level only then can u manage it properly.

You will get the info you nee in the book so u are on the right track. The FAQs section is excellent for clarifications and the pdf summary of the Program is important tp print out for quick referrence.