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Thread: Was last here 15 years ago.....

  1. #11
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    Hi Hoots, I remember your name as well. But not much else. That's not unusual for me.
    Welcome back.

    I also believe that diet, rest, and exercise is the way to go for the best health. Do I follow that? Unfortunately not.
    Last edited by Parsi; 06-01-2019 at 07:14 AM.


  2. #12
    Distinguished Community Member Sunshine's Avatar
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    Quote Originally Posted by hootswithowls View Post
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    Hi All, I just called, and it seems the MRI machine is a 1.5 Tesla. So....guess I'm stuck with that for now....at least, I'll start with that. On the positive side, they had an opening for an appt. on Saturday, June 8th, so, at least I'll get it done almost a week sooner.

    Yeah, regarding diet, I figure eating healthy, exercising, and maintaining a normal BMI can only help all aspects of life.

    Cheers,

    hootswithowls
    That really stinks, the 1.5T—- what a cheapa$$ plan that uses an outdated MRI. Even a 2T sucks for people whose MS is hard to visualize on MRI....can you insist?

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  4. #13

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    Quote Originally Posted by Sunshine View Post
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    That really stinks, the 1.5T—- what a cheapa$$ plan that uses an outdated MRI. Even a 2T sucks for people whose MS is hard to visualize on MRI....can you insist?
    I e-mailed both my neurologist (out until mid next week) and my PCP about it. So, we'll see. Thing is, I'm really anxious to have it done now, and my appointment is scheduled for a week away. I'm worried that if I go for the 3.0T, it might take more time, but then again, I read that the 3.0T is faster, so maybe I wouldn't have a lengthy wait?

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  6. #14

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    Hi Everyone,

    What's everyone's story with symptoms and diagnosis - when this all started, symptoms, what meds are you on, supplements, diet, etc.? I thought there was a thread where everyone shared their stories, but I can't seem to find it. I don't want to ask people to repeat things - a link is good.

    Thanks,

    HWO

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  8. #15
    Distinguished Community Member Sunshine's Avatar
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    I would def wait for the 3T unless its an emergency. And if it is, I would think you could get it on that basis or through the ER or have doc call and ask for it STAT.

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  10. #16

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    Quote Originally Posted by Sunshine View Post
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    I would def wait for the 3T unless its an emergency. And if it is, I would think you could get it on that basis or through the ER or have doc call and ask for it STAT.
    Did it, Sunshine - thank you. I now have the 3T machine on Sunday.

    Thank you,

    HWO

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  12. #17
    Distinguished Community Member Sunshine's Avatar
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    Perfect. Sunday is only 6 days away.

    But i read in your other thread about new sever head pain. Sounds like ER should be done now. And let them know, if they say MRI, that you Insist on the 3T as you suspect MS based on history .

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  14. #18

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    Hi Hootswithowls, Hi Everybody, 😊

    Sorry you’re having difficulty hootswithowls. I just looked into this forum for the first time in a number of years and saw your note. Thanks stillstANNding and Virginia for posting my updates from 2012 (I didn’t remember when I last checked in).

    With respect to supplements, I would encourage everyone with suspected or diagnosed MS have their Vitamin D levels checked. It is known that MS patients disproportionally have low Vitamin D levels and MS incidence has repeatedly been correlated with regions with low sunshine (although correlation does not prove causation). My levels were low and I have been taking between 2000 and 5000 IUs of D3 per day for many years.

    I continue to get from my diet high levels of omega-3 fatty acids (I eat a lot of salmon, and have ground flaxseed with my kefir most mornings). There is some evidence to suggest a modest effect on MS but omega-3s are important to both heart and brain health in any event. Here’s a recent clinical trial with D3 and omega-3s vs placebo which demonstrated improvement in EDSS and metabolic parameters in the treatment group:

    High-dose ω-3 Fatty Acid Plus Vitamin D3 Supplementation Affects Clinical Symptoms and Metabolic Status of Patients with Multiple Sclerosis: A Randomized Controlled Clinical Trial.

    And here is a systematic review from this year which found that Vitamin D supplementation seems to be most effective in those with lower baseline disability:

    Effectiveness of Vitamin D Supplementation in the Management of Multiple Sclerosis: A Systematic Review.

    Although I no longer take it myself, I would take alpha lipoic acid (ALA) if I were symptomatic, particularly if I were having issues with leg weakness. Here’s a recent small trial in which ALA had a a modest effect on walking in SPMS:

    Effects of lipoic acid on walking performance, gait, and balance in secondary progressive multiple sclerosis.

    I’ve had no symptoms of MS since 2002 although my last MRI in 2004 showed new lesions on my spinal cord (at the time my neurologist remarked “but we already knew you had MS”). I only had the 2004 MRI for insurance purposes, not because of symptoms. I haven’t seen a neurologist (other than my wife ) since then. In fact I was surprised a couple of weeks ago when Anthem BCBS mailed me a letter encouraging me to see an MS specialist (first time I have ever had an insurer encourage me to use their insurance).

    I have long believed that MS therapies are not more effective because MS is a constellation of symptoms lacking a common cause (this belief is not original to me). Different therapies work for different people … if something doesn’t work, try something else. And even if a therapy is effective, it may not undo damage that is already done. Unfortunately there is no magic bullet for everyone.

    Still living on a barrier island on the outskirts of Charleston, SC with my lovely spouse. Still travelling although not quite as often. We travelled about 500,000 air miles in the first 5 years of our marriage … now we’re out of the country about two months out of the year. To escape Charleston’s summer heat and humidity we have been spending a month in a much cooler climate in summer … two years ago in Sweden and Estonia, last year in Sydney, Australia, and this summer in Newfoundland. And we usually spend about a month including Christmas in Europe (we love the Christmas markets there). Last Christmas in Paris, the prior Christmas in Vienna.

    We did do a volunteer stint in Myanmar (Burma) (actually my wife did … I accompanied her ). The clinic in which she worked (and in which she was training doctors) brought in everyone from villages surrounding Bagan with neurological complaints to see her. People would spend the night on the ground in order to see her the next day. She saw and treated hundreds of patients ... wonderful experience for both of us. Bagan is amazing … in a fairly small area at one time there were 13,000 Buddhist temples (constructed between the 9th and 13th centuries) … over 3,000 are still standing. We stayed on a beautiful mango plantation (and they gave me an office in the clinic where I could work while my wife saw patients).

    Sad to learn of Peg.

    All best,
    Mark
    Last edited by xo++; 06-05-2019 at 10:37 AM.


  15. #19
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    How wonderful to hear from you, Mark. Glad to have the scientific papers and some details of your travel.

    My question is why do so many of us have low Vitamin D?

    ANN
    There comes a time when silence is betrayal.- MLK

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  17. #20
    Distinguished Community Member Sunshine's Avatar
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    Hey Mark
    Its great to hear from you. You certainly are living a storied life, and managing to live very well with the MS.

    I used to post under a different username...Changed my handle for various reasons. I am the one that was greatly harmed while taking recalled batches of Avonex back in 2004.

    My MS has been very mild all along, and in fact,long stretches of time I drifted from the board. Until a new rare neuro disease called Stiff Person Syndrome struck me down—I come here for socializing and support. The SPS curtails most socializing in non screen life. I started a bulletin board at BT on SPS— rarely does anyone else post it, but there are plenty that use it like a directory of info.( There are about 400 people in USA with SPS...)

    We have mentioned you here from time to time, missed your good spirits and your scientific information and presentation for the group! Its great to see you pop up! We are all ageing and so the conversation now is more about ageing with MS and its challenges... rather than How can I work with MS and raise my kids !

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