Newly diagnosed at 61 at long last

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Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Mon Oct 17, 2011 2:57 pm

:sad: At the age of 61 I was finally been diagnosed with MS on Sept 12, after having an episode of slurred speech, tierednes, and foggy vision 25 years ago where I was told I had a virus and years of pain & now finally losing my ability to walk without assistance. I'd been telliing countless symptoms to my GP for the last 5 years, who seemed to ignore me & when I did actually ask her if I had MS 2 1/2 years ago, I was told a flat "No".
Obviously I had stepped on her toes with my own dx as after that she seemed to hear me even less. When I told her about my increased bladder control problems, I was told that this is a typical post menopausal issue. And she made it quite clear from her tone of voice that she didn't want to hear about it anymore.
It was incredibly hard to keep going back to her and the thought of trying to find another GP was so discouraging especially with the pain and sleepless nights I was having from the constant tingling electric shock feelings I had in my back & legs. It was a nightmare.
After getting worse I was finally sent to a neurologist who ordered a thoracic MRI for which I had to wait 13 months as the 1st stage of my unlnown MS diagnosis
And now this neuro tells me he thought maybe he saw telltale MS lesions but didn't bother to ask for a brain scan right away.
This spring I went to my GP to report more symptoms: a dragging left foot, a fall when my left leg froze -things that she just couldn't ignore.
Sent to see the same neuro again and he ordered an brain MRI which took 1 month to get.
Sept 5 got a phone call from the MS clinic which I wasn’t able to answer before the machine picked it up and I heard the message telling me that I was to have an appointment at the MS clinic in 1 1/2 or 2 months. I got to hear that devastating news all alone at home.
Called them back to confirm what I had just heard & told them that I hadn’t had my consultation with the neurologist yet.
They refused to say whether or not I had MS as I hadn’t seen the neurologist yet, although it was pretty obvious.
I was diagnosed by neuro on Sept 12 told verbally that I had M S after results of brain scan done mid August. I was told that he had suspected MS the 1st time he saw me almost 2 years ago when he ordered a thoracic MRI and should have ordered a brain scan as well but he didn’t.
Then he said that when he saw the thoracic MRI last February that he thought perhaps he had seen a lesion on my spine. But he didn’t investigate any more. What was I? - chopped liver or more likely just an inconvenience - a woman 61 years old not worth bothering about.
I've had it with these doctors and I'd rather go to a walk in clinic than have to deal with them again.
Now I've got my diagnosis in writing I will start working on getting a decent GP that doesn't ignore me.
I know our medical is covered by our Canadian gov't medical plans but it is insane that we can't switch doctors or get a second opinion because there aren't enough doctors.
Last edited by Azaeleaprawn on Tue Jan 03, 2012 10:12 pm, edited 1 time in total.
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Re: Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Fri Nov 11, 2011 7:33 am

So finally got in to the local MS clinic and saw one of their neuros for my "official/definitive" diagnosis and was told I have SPMS. Exactly what I thought all along.
Talk about "Do no harm" - my idiot GP (who I am no longer seeing) did lots of harm by saying I didn't have MS almost 3 years ago!
Don't take "no" for an answer from your doctor if you think you have MS, keep asking till they give you an answer instead of being put off like I did.
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Re: Newly diagnosed at 61 at long last

Postby want2bike » Fri Nov 11, 2011 2:34 pm

According to the JAMA doctors in the US are the 3rd leading cause of death. Dr. Swank has a diet he used to treat his MS patience for 50 years with good results. He was able to stop the progression of MS with his diet. They will try and put you on their drugs but studies show the drugs will make you sicker. You will have to decide wheither to listen to them or believe the studies showing the food we eat can heal us.

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.healingdaily.com/conditions/ ... panies.htm

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.facebook.com/notes/ccsvi-in- ... 1295097210
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Re: Newly diagnosed at 61 at long last

Postby jimmylegs » Fri Nov 11, 2011 4:05 pm

i'm with you, want2bike! except once the wheels are off, it can take more than diet modifications to get back on a track that we sometimes left decades ago. that's when the supplements come into play. and of course nutrition only goes so far, but it's worthwhile getting whatever benefits you can!

azalea, there is so much you can do to establish a healthy base - and here in canada so much bloodwork is covered, as long as you have a decent GP of course.

if not, you can get bloodwork ordered through a nutritionist. those lab tests would not be covered by provincial/territorial insurance, so it's the cost of the nutritionist's time plus the actual testing.

you might be interested in some reading via the links included in my 'signature', below.

a belated welcome to the forum!
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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Re: Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Sun Nov 13, 2011 6:31 pm

Thank you all for your welcoming responses, suggestions & the links.

I am ever so thankful that the neuro I saw at the MS clinic is not big on the DMDs and didn't even make the slightest attempt to suggest any drugs, which he acknowledged wouldn't be helpful for me anyway.
To quote him: "the impact of the therapies introduced in the mid-90s was relatively modest. "Their impact was exaggerated significantly through a lot of marketing", "Drugs like Tysabri are more effective but there are safety issues," citing the risk of the brain infection progressive multifocal leukoencephalopathy (PML). "The concern is that the number of cases of PML seems to be going up," - noting that the number jumped by 10 in one day. "That's when you start to wonder about the benefit/risk ratio. But, if the condition is diagnosed really early and the drug stopped, patients can recover quite well."
He said that losing weight will make walking easier for me. I've already lost 15 lbs, since the spring and am now following a combination Swank diet & Best Bet diet with which I'm continuing to to take off some more weight as well as noticing certain symptoms subsiding.

I've been reading, nonstop, absolutely everything I can about diet & supplements and their effects on MS and am beginning a regimen of certain supplements mentioned by Asthon Embry which are helping me keep colds and other bugs away as well as fending off the worst of horrible fatigue which was plaguing me so badly this summer.
But the one, oh so maddening, symptom is Tinnitus (it seems to be with me day & night with the very occasional let up)- if anyone has any effective suggestions - I'll be forever grateful.

I have found a GP at a walk in clinic, who wrote me a prescription for building a ramp at our home & is a decent & sympathetic. He made a copy of my diagnosis to keep on file & even agreed to fill out an application for medical marijuana when I told him that I'd used it very successfully for my back pain.
He comes highly recommended by a wonderful nurse practioner who I went to with some pain issues when I had given up on my family GP. So I'll ask him for bloodwork & also ask him his thoughts on Low Dose Naltroxone which I understand can be helpful for muscle spasticity which is seriously affecting my walking.
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Re: Newly diagnosed at 61 at long last

Postby jimmylegs » Sun Nov 13, 2011 6:44 pm

you're very welcome!

re the tinnitus - how much zinc are you taking daily?

how long have you been on the best bet supplement regimen?

by the sounds of it, you are off gluten, is that so?

can you get a zinc test without too much trouble?
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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Re: Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Sun Nov 13, 2011 9:51 pm

I'm taking the Ashton recommended 25 mg of zinc daily.
Can a zinc deficiency be related to tinnitus? My old useless GP had absolutely no suggestions when I reported my tinnitus her over two years ago but then she wasn't very helpful with anything.

I've been on these supplements for about a month & a half. What with the bulk of the Best Bet recommended supplements I'm taking I sometimes don't even feel the need to eat - not a good idea when regimented regular small meals seems to fare me best.

I'm going to see if I can get tested for supplements asap as all this new supplement stuff has my head spinning.

And yes I'm off gluten.
My whole family is and we've found this to be amazing as my daughter & husband have psoriasis which now is calming down since we've cut gluten from our diets. My daughters sores and plaques have all but disappeared with only a bit of resness and bits of dry skin since we've given up gluten and the few times that she's broken down & had a slice of pizza with friends, her psoriasis has flared with a vengeance.
The main Best Bet foods that we haven't cut out of our diet are legumes.
I also plan on getting allergy tests through a naturopath to establish if there is anything in what I am now eating to which I have an allergyas I get stuffy sinuses after I've eaten a meal.
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Re: Newly diagnosed at 61 at long last

Postby jimmylegs » Sun Nov 13, 2011 10:09 pm

hi yes there are links between tinnitus and zinc. but only if you have low levels. if you have been taking 25mg zinc per day for 6 weeks you might want to boost it up to 50mg of zinc (balanced with 2mg copper) daily.

can you tell me a little bit about how you time all the different supplements in relation to meals and each other? that can have an impact on absorption.

also, are you 'reducing' red meat or 'eliminating' red meat? it's an important source of zinc and you might need the higher supplemental amount if you aren't getting enough in the diet.

zinc levels increase when on gluten free diets, because the body uses up a lot of zinc when dealing with gluten.

zinc supplements can be really good for psoriasis sufferers (when they have low levels to start with). glad to hear they are feeling better :D

i hear you re being less hungry when supplementing lots. it's so important to make sure supplements add to a foundation of healthy nutrient-dense whole foods.

good idea re nutrient level testing! hope you can find out a zinc number. if it's less than 18 umol/L, you could increase the zinc dose and see if the tinnitus improved. or you could just do trial and error - 50mg zinc a day for a week or two won't hurt (i've been taking that much daily for ages). good luck!
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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Re: Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Mon Nov 14, 2011 1:28 pm

Thanks, jimmylegs, for all the zinc info.
Yeah, I've given up red meat too - all a huge lifestyle change but I figure if any of it can make a difference for the betterment of things for me - it's worth it.
But in the meantime there is a lot of figuring out how to make sure that I'm properly replacing the nutrients I'm no longer consuming with proper supplements or other types of foods. It's a huge learning curve and a little daunting at times when I look at the scale of change I'm trying to undergo in such a short time.

My timing on various supplements is a work in progress. To start with I simply downed most of the supplements at once in the morning, making breakfast a non-issue for me. But over time I'm realising that things like zinc, calcium and magnesium might need to be separated form the rest and each other to be individually effective and not interfere with other supplements.
To help me in this I think I'm going to be seeing a naturopath who I met at an MS Society meeting. It's a start and I know I might be going to a few of them to find the right patient/doctor fit. In the meantime I've got a good physio who has been helping me with my walking -so I feel good about that.
There is so very much that needs to be addressed with this condition, it's hard to know where to start.
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Re: Newly diagnosed at 61 at long last

Postby jimmylegs » Mon Nov 14, 2011 2:40 pm

it is so challenging isn't it!

i urge you to follow this best bet instruction carefully, noting that red meat is in the 'reduce' not the 'eliminate' category: Eat red meat (lean cuts) only once a week that once a week is important as it provides more bioavailable zinc than things like pumpkin seeds. also please note under the 'increase' category, "Eat skinless chicken breast, game meat and fish for protein content." venison is a great choice if you can get some. check this out http://www.whfoods.com/genpage.php?tnam ... e&dbid=139

by the way that's a really great web site: www.whfoods.com

it has lots of detail on healthy nutrient dense foods - here's the zinc page: http://whfoods.org/genpage.php?tname=nutrient&dbid=115

man i could not handle taking everything at once - i take a few pills with each meal. i make sure to take some magnesium at the same time as d3, and some at a different time, with b complex. vitamin d3 is a real mineral hog. before i learned to put some things in on their own, away from d3, i paid the price and it was bad! i think consulting with a naturopath would be a great idea.

i think you are starting in the right place, with lots of learning up front and being proactive about the things that you can change that are day to day, and in your control. good stuff!
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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Re: Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Tue Nov 15, 2011 12:04 am

want2bike - I just got around to looking at the links you posted - right on! they so reflect many of my own views of drug companies and their hold over so many aliopathic practioners. Immediately I was diagnosed I started in on reading about MS treatments and quickly developed what I can only call a healthy fear of of the so called disease modifying drugs. What a racket that is!

jimmylegs - thanks again for your nutritional advice and the very useful WHFoods site . Interesting regarding venison being a good choice for a red meat.
My husband used to hunt years ago and most of the red meat we consumed then was venison. Too bad that he got rid of his guns and has given it up as the area we live in and probably the whole city is inundated with deer.
Tonight when we were coming home there was a huge buck wandering into a neighbour's driveway, who looked mighty appetizing, all nicely fattened from a summer of gorging himself on bushels of prize roses and the choicest produce from local vegetable gardens.

I shall be looking at the deer that browse in our meadow in a whole new light.
Perhaps I could convince my husband to take up the crossbow; a nice quiet weapon to bag some healthy victuals in a residential country area.
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Re: Newly diagnosed at 61 at long last

Postby want2bike » Tue Nov 15, 2011 7:59 am

I am moving more towards vegan since everything I am seeing suggest eating of any animal products is a bad thing. I followed a detoxification program where I took many vitamins, minerals and supplements and it worked good for me. You can take all the supplements you want but these things have to get into your body. That is done if you have a healthy digestive system. Your digestive tract must perform well in order to absorp these nutrients. THink a probiotic is necessary to insure a good digestive tract. I use Kombucha tea to give me the probiotics my body needs. Your digestive tract is made up of good bacteria and bad bacteria. It is important to keep the good bacteria high so you crowd out the bad bacteria. Good health can be a puzzel but it is up to you to figure it out. Wishing you the best in getting your health back.

http://www.youtube.com/watch?v=-2g1gxQuFpM

http://www.youtube.com/watch?v=ob3Nmr1i ... re=related

http://www.jonbarron.org/enzymes/barron ... DQodmkMt-g

http://www.organic-kombucha.com/index.html
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Re: Newly diagnosed at 61 at long last

Postby Azaeleaprawn » Tue Nov 15, 2011 2:05 pm

Yes, want2bike, an enormous puzzel as I'm discovering - I used to take good health for granted because I found it easy to stay well with a small focus on what I was eating and a few added supplements & vitamins. Never again will I think it's easy.
I do take some probiotics in the form of an acidophilus supplement that I keep in the fridge, but I'll look into the tea as an alternate form and bring it up at my naturopathic appointment. Thanks for the new links - I really appreciate all the info put my way so I am able to make more informed choices in my journey back to health as I realize it's really up to me since the medical community doesn't have a lot to offer other than a great wodge of drugs.
Whatever I'm doing with supplements up till now seems to be helping very well as the worst of the tingling/electric shock stuff in my back and legs is going away. So ever onward and upward, I hope.
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Re: Newly diagnosed at 61 at long last

Postby jimmylegs » Tue Nov 15, 2011 9:10 pm

probiotics are important too - they can only flourish if you're putting in the right ingredients ie supplements after antibiotics

here's a list of stuff that messes with gut flora (from an unreferenced paleo diet source, sorry - and i'm not endorsing everything at this link because i have not done tons of literature review on the paleo approach - for instance i have no data to offer an opinion on fecal transplantation but, gut reaction .. no pun intended.. to me it sounds like transplants should be completely unnecessary)
http://paleodietlifestyle.com/you-and-your-gut-flora/

some things that may lead to a disruption of the gut flora:
•NSAIDs (Non-steroidal anti-inflammatory drugs);
•Antibiotics;
•Birth control pill;
•Food toxins mostly from grains and legumes; (i'd need more detail to buy into this list item)
•Excess carbohydrate and fructose consumption;
•Inflammation from excess total polyunsaturated and omega-6 fat consumption;
•Infections;
•Chronic stress;
•Lack of sleep;
•Improper nutrient intake and deficiency in some critical vitamins and minerals;
•Weak immune system (often caused by all of the above);

azalea, your tale of fat juicy venison roaming the neighbourhood, just begging to stumble onto your plate, made me smile :D i'm really glad to hear that your symptoms are improving!!!
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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