New, Scared and Looking for Support

New members should feel free to introduce themselves here
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jimmylegs
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Re: New, Scared and Looking for Support

Post by jimmylegs » Sat Oct 13, 2018 7:34 am

hi there :) yep i've dodged the meds bullet so far. i'm 12 years in and since i got sick early this year, for the first time i can say things are not up to prior status quo. needs some work!

re tests, yes to serum d3, yes to serum b12.
less common to date but definitely yes re serum magnesium (especially if d3 is low and requires supplemental replenishment)

other low hanging fruit you may already have on file and that would be good to know in advance of any supplementation programme:
serum ferritin, hemoglobin.

less common stuff but very relevant and useful info: serum zinc and serum copper (no not urine ceruloplasmin)

nice to know but not need to know: serum uric acid

otherwise, msdx time is definitely learning curve time. think about taking on these simple questions one by one:
have any of your docs ever referred you to a preventive public health professional eg a registered dietitian?
do you have a copy of public health recommendations for diet and essential nutrients?
is there a printout of the harvard healthy eating plate on your fridge?
can you readily access recommended daily intakes of essential nutrients for your age and gender, via a file or link?
do you need to learn what those recommendations are and where you can find them?
do you have a sense of the most common nutrient issues?
those most commonly associated with chronic illness?
with ms in particular?
do you know how closely your day to day adheres or doesn't to existing evidence-based public health recommendations for dietary intake of foods and essential nutrients?
do you need to keep, or have you recently kept, a detailed diet diary of foods fluids supplements and meds? (if not, you can find a selection of diet diary templates online)
once you have thought about all of these questions, the first next steps on a list of action items will likely be obvious :)
early baby steps:
if the answer to 1. is no, ask for the referral.
if the answer to 2. is no, find them and print or bookmark copies (check links at the start of the diet forum)

hope that helps :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Kittie
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Re: New, Scared and Looking for Support

Post by Kittie » Mon Oct 15, 2018 5:52 am

Hi Lizzy,

Read my blog and how I have progressed the last year. It comes under Dr. Coimbra Protocol (Kittie) because that is how I started. Don't be frightened first of all. I was diagnosed 1980 and I am still walking with a brace.

Your initial Doctor said you were low in D. He was right D3 sunshine! We are all low. He would have recommended a low amount of it that wouldn't do anything for you. Also you are right Magnesium (Good State Ion-Mag, Life Extension Magnesium Citrate and Magtein), B2 Riboflavin (three a day) and I would also add Carlson Super DHA 500mg DHA fish oil concentrate. I take three a day. Good healthy diet, fruit, vegetables, fish. Lots of water.

Facebook : go on to MS Recovery With Vitamin D3 & Michael Cawley. He is brilliant and I thoroughly recommend him. You will learn a lot from other people on the site. Make up your own mind.

I stayed away from the MS drugs but that is your choice. Personally I don't think I would be where I am today if I had continued with the MS drugs.

Best of luck Lizzy,

Kittie.

lizzyc87
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Re: New, Scared and Looking for Support

Post by lizzyc87 » Wed Oct 17, 2018 5:27 pm

Thank you! I am glad these type of support exists online as it makes me and I’m sure everyone else feel less alone.
I *think* I have a pretty healthy diet, in the last year and a half I lost 40 lbs by eating more veggies and fruits and cutting down a lot of starches and sugar but I have gone a bit off the wagon in the last few months so I need to restart exercising and adding more veggies into my diet.
I just had blood work done and I will report back on the levels of the vitamins they tested.

I had a question that maybe some one can answer, according to my dr my first true relapse was last year when my left side waist down went totally numb, but most of my symptoms now are random intermittent tingling, numbness in legs and arms as well as a bit of cramping in my toes from time to time. I do have dizziness that sorta comes and goes but my question is so far I only have brain lesions that I know of (I don’t have a thorathic mri) but the cervical one was clear. Based on my symptoms in my legs is it likely that there are thoracic lesions or can brain lesions cause symptoms in legs and arms?

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Scott1
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Re: New, Scared and Looking for Support

Post by Scott1 » Wed Oct 17, 2018 11:31 pm

Hi,

It depends is probably the right answer. Perhaps the MRI slices were too wide or a contrast wasn't used and some lesions didn't get picked up. You're actually better off not worrying too much about the MRI. It's just a picture, it's not a cure.

The focus on diet and exercise is going to be much more useful than hunting down a lesion or two.
It is a really good time to start my favorite type of exercise which is Pilates. That is all about eccentric movement rather than concentric. When you do that you strengthen the muscle in an elongated relaxed state rather than when it is compacted. That should help the toe cramps if you tell the instructors you have them in advance.

Others can deal with results of your tests. They are better than me at it.

Regards,

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