Recently Diagnosed - Still unsure which route to take

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Recently Diagnosed - Still unsure which route to take

Postby Mirry » Sun Aug 08, 2010 3:02 pm

I was diagnosed finally on Friday that I have MS. I went to the Dr to sort out my migraines I had been getting for years. My Dr sent me for an MRI. A specialist I saw a few months ago, didn't review my MRI scans and told me to go lay down and take a pill. Part of me wishes I had left it at that, but my Dr wasn't happy and referred me to another specialist on Friday. Now this specialist wants me to start Copaxone injections daily.

My Dr in the UK thought I had MS back when I was 24 but the tests were inconclusive. So i have gone another 16 years with no symptoms and no treatments, so does that mean the MS has really not progressed in 16 years in which case I am very thankful.

I am really confused as to what to do. If I hadn't of gone to the Dr about my migraines I wouldn't of known I had MS. The only symptom I can see that I have is I get tired sometimes, but I put that down to the hot weather here in Las Vegas. Being born in the UK I was never tired as it was always so cold and I always felt well. Since being here the last 2 1/2 years I just feel tired.

My question is, should I really start meds now, is it really at that stage where i need to. I have got to 40 without knowing and if i have been fine all this time, am i going to make things worse and possibly invite symptoms in by starting treatment.

I don't have any family here to talk to and I don't want to worry my husband as he is deploying with the Air Force for a year and he really doesn't need to be worrying about me thousands of miles away. It will be tough being here all on my own as it is without worrying about what I should do so your thoughts/advice would be appreciated.

thanks
Mirry
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Postby jimmylegs » Sun Aug 08, 2010 3:15 pm

hi mirry there are a few things you can investigate to widen your search beyond the basic MS diagnostic assessments.

one thing that's new is the testing for jugular narrowing. have a read in the CCSVI forum to get up to speed. read the 'newbies read this first' announcement for starters.

personally i do not take MS pharma drugs and i have not been assessed for CCSVI. i have managed my condition through requesting bloodwork to understand which of my vitamin mineral and other test results are consistent with an ms patient profile. then i supplemented to get them in line with a 'healthy control' profile.

* * *

had to split but i'm back. just so you know, most of the results i've had, both 'ms profile' and 'healthy profile' have come back from the lab as 'normal'. normal covers both healthy and sick levels; saying your blood is okay because it's 'normal' is about the stupidest thing out there.

feel free to fire any questions my way if you are interested in looking at nutrition. my signature links can point you in good directions for reading. have fun with the learning curve!
Last edited by jimmylegs on Sun Aug 08, 2010 4:50 pm, edited 1 time in total.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Hello

Postby ppicklee » Sun Aug 08, 2010 4:05 pm

I wanted to say hi Mirry. :-) I just wanted to let you know that I have read your post and welcome you. I am with Jimmylegs's advice. Research the CCSVI forum on this web site. Read the information that you can but recognize that only you know your body. Again... welcome!
p
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Postby lyndacarol » Sun Aug 08, 2010 4:06 pm

Mirry-- welcome to our community. You have found a group with a common enemy, MS. Most of us try to be supportive of fellow members; we seek and share information on the relative topics. You have found friends here who will try to answer your questions, although science has not found the definitive answers yet.

Ask your questions here; we will try to help. As to medication, after researching the options, many of us (including me) have chosen not to use any of the drugs available today. Since the scientists do not know the cause of MS, I don't understand how they can recommend anything as "possible helping" -- in my opinion, that would be as likely to help as randomly choosing something off of the shelves in a pharmacy.

But that is MY opinion; you must decide for yourself. I suggest you find a good doctor that you can trust and feel that you can work with. Start with testing (blood tests of every sort -- levels of glucose, insulin, cortisol, thyroid hormones, even vitamins and minerals) and establish where you are today.

Heat usually affects people with MS. One member here described his wife with MS as "becoming a noodle in the heat." This has become a favorite phrase of mine since it describes me so well too.

MS takes many different courses. Many people have benign cases -- a good friend had one episode 18 years ago, but nothing since. If you have MS, your history seems to be a mild case too.
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Recently Diagnosed - Still unsure which route to take

Postby Mirry » Mon Aug 09, 2010 6:31 am

Thank you everyone for your comments.

I now have appointments set up to test the muscle function and nerve function in my torso and another round of MRI's but this time it's different, than the standard MRI they did.

The first specialist I saw was not at all helpful but this new specialist, I like him very much. He took the time to show me the MRI scans and had really taken the time to explain things to me. I do have more questions that I plan to ask on my next visit.

I will call my doctor on base today and arrange to have a barrage of blood tests done. I am so thankful I have a Dr on base that is great and always wants to do the best by me (you hear horror stories of base hospitals) but on the other hand, i'm rather annoyed he was so thorough with my migraines as I wouldn't of known I had MS and sometimes ignorance is definitely bliss. I am going to have to talk to him about being to thorough :)

If I can manage my health with vitamins, minerals and healthy eating I would rather go that route. I worry that if I start treatment when I feel great and have very few symptoms, am I just opening the door to invite MS to move in and bring all its baggage with it.

I was told when I had my accident at 30 I wouldn't walk again but I did, I was determined to prove my surgeons wrong, I wasn't going to be wheelchair bound at 30. Now I have been thrown another curve ball and I shall deal with this exactly the same way, with the same determination and positive attitude. I have too many plans, goals and dreams to fulfill and MS in not going to stand in the way.

Thank you all for being so supportive, it's very lonely being in a different country without family here to be my support network, so I appreciate you all.
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Postby jimmylegs » Mon Aug 09, 2010 6:42 am

great attitude mirry! here is a list of key tests in terms of vitamins and minerals to support body systems. in ms patients, levels of these nutrients are typically different from healthy control levels.

b12 - aim for min 500 pmol/L

vitamin d3 [25(OH)D3 is the proper metabolite to test] aim for min 100 nmol/L - no higher than 250 nmol/L

zinc - aim for 18.2 umol/L (not too far above or below)

uric acid (you don't supplement this but it's a useful indicator) - aim for 290-300 umol/L

magnesium - aim for .91 mmol/L

those are key nutritional tests to start with. if you would like some research abstracts to support your request for these tests i can pull some studies together for you. let me know
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Algis » Mon Aug 09, 2010 6:47 am

Go for it mirry ;) I've also been in a wc at 21 because of a crash and it took me a zip to run again :)
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Recently Diagnosed - Still unsure which route to take

Postby Mirry » Mon Aug 09, 2010 7:34 am

Thank you jimmylegs.

I am definitely going to get my bloods run and see where I sit first before I make any changes/decisions. I hadn't thought of running bloods, I guess because my neurologist didn't mention it, but it was good advice.

I looked at who takes what supplements and what the experts for MS say and what each one is good for, OMG, I am going to rattle. I am really curious now as to what my blood results will show.

Will keep you posted and thanks

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Postby jimmylegs » Mon Aug 09, 2010 7:47 am

it's amazing what our health care providers don't bother to tell us, isn't it?

luckily the information is out there and nowadays, so accessible.

good luck and i'll check back for updates :)

jimmylegs
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Lyon » Mon Aug 09, 2010 8:19 am

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Last edited by Lyon on Sun Nov 20, 2011 7:02 pm, edited 1 time in total.
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Postby jimmylegs » Mon Aug 09, 2010 8:24 am

:roll:
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Recently Diagnosed - Unsure which way to go

Postby Mirry » Mon Aug 09, 2010 9:51 am

Lyon

Thank you for you reply. It was certainly a very nice "welcome to our site" message from you. I feel so much better now.

Firstly, I am very well aware of what I need to do. But, just because my Dr has an MD after his name, does not mean he is an expert in MS. For me, those with MS are better equipped to answer my queries, questions and give me their own opinions based on their own experiences and symptoms.

Secondly, I am not a child nor stupied either. I am a well educated adult. Now, maybe I have got this wrong, but isnt this site designed for people with MS to ask others about how they cope, what has worked and not worked for them, how they manage their diets/supplements, what medications if any do they take and why they made the decisions they have made.
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Postby Lyon » Mon Aug 09, 2010 10:47 am

.
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Re: Recently Diagnosed - Unsure which way to go

Postby scorpion » Mon Aug 09, 2010 11:46 am

Mirry wrote:Lyon

Thank you for you reply. It was certainly a very nice "welcome to our site" message from you. I feel so much better now.

Firstly, I am very well aware of what I need to do. But, just because my Dr has an MD after his name, does not mean he is an expert in MS. For me, those with MS are better equipped to answer my queries, questions and give me their own opinions based on their own experiences and symptoms.
Secondly, I am not a child nor stupied either. I am a well educated adult. Now, maybe I have got this wrong, but isnt this site designed for people with MS to ask others about how they cope, what has worked and not worked for them, how they manage their diets/supplements, what medications if any do they take and why they made the decisions they have made.


8O I think you will find this site a perfect fit than Mirry.
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Postby jimmylegs » Mon Aug 09, 2010 12:17 pm

can it you guys.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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