1. < Multiple Sclerosis (MS)
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Recently diagnosed with Multiple sclerosis

Posted by seanmay23 @seanmay23, Sep 12, 2021

Recently diagnosed with Multiple sclerosis, and looking for help.

Interested in more discussions like this? Go to the Multiple Sclerosis (MS) Support Group.

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nightops | @nightops | Jan 5, 2023
In reply to @colleenyoung "Welcome @nightops. I moved your message to this existing discussion here: - Recently diagnosed with Multiple..." + (show)
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Welcome @nightops. I moved your message to this existing discussion here:
- Recently diagnosed with Multiple sclerosis: https://connect.mayoclinic.org/discussion/recently-diagnosed-with-multiple-sclerosis/

I did this so you can read the previous posts and connect easily with active members like @seanmay23 @flowergirl4167 @strongevergreen @kco @beltonite410 @hansa @kathl @dsheahan1951 and others.

I see you also introduced yourself in this related discussion too. Nice!
- Multiple Sclerosis (MS) - please introduce yourself: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

Good for you and your for making walking a priority and working on a healthy diet. Coping with health stress along with pressures of the job isn't easy. It's so easy to perceive every body oddity as the worse case scenario. As you begin to relearn your body, its limits and abilities, I think you'll get better at calibrating your sense of what needs medical attention. Do you have a good medical team or doctor that you're working with to navigate the new normal of MS?

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I think my neuro is a really good doc, but this is my first round with any major medical. I’m meeting with my PCP next week to go over everything. I have a great local church family that is very supportive, and I’m starting to connect with local families that are going through MS and other autoimmune issues as well. If there are other groups/teams you would suggest, I’d love to know! You can’t have too big of a care base!

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tabuschlen | @tabuschlen | Jan 6, 2023
In reply to @nightops "Hey everyone... completely new to this. 43yo male, and based off of what I've read, my..." + (show)
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Hey everyone... completely new to this. 43yo male, and based off of what I've read, my first round with MS was pretty mild. In early November I started feeling odd sensations in the bottom of my feet like I was walking on bunched up socks. *everything* waist down lost about 30% sensation. Right arm lost some feeling from should, down the back side of the arm, and from my elbow down to my right thumb and index finger are constantly tingly like they are walking up from being asleep. They still have sensation, but it's hard to notice through the tingles.

November 11 went to ER, got MRIs with and without contrast. 6mm lesion in my left occipital lobe (no vision impairment), and 2 smaller active lesions on my right frontal. Lumbar puncture revealed slightly elevated MBP levels and bands. December 5 the neuro says he doesn't see how it could possibly be a malignancy, and calls it MS. Cancer runs in my family... so evidently my hypochondriac side gets hung up on the word cancer...

[Background context:
--a few months ago a close friend lost a family member due to fulminate MS, so I'm already panicking a bit by this point.
--On Jan 1 '22 I was 200lbs. In April I went on a fast, dropped 10lbs... then got hit by C19 and dropped another 10lbs... so down to about 180lbs where this story kicks off
/End background]

Doc wants me on Copaxone 40mg. I'm good with that based on what I've read. So I switch up my diet focusing on raw fruits/veg, non-processed foods, and I had already started cutting gluten out due to my wife having an autoimmune as well. My wife and I walk each morning, and once I got the verdict of MS (and knowing it *can* destroy your ability to walk), I started slowly working into jogging (used to run 1/2 marathons frequently until '18).

Right now I'm struggling with the diet and the anxiety/stress. Right as all of this was starting I took a upper level position with my company, and I'm now leading 2 teams. It's great news, but between the initial stress of the job, the stress of not knowing what was happening with my body, and the initial 3x1,000mg Solu-Medrol infusions I had, I started bottoming out. I've dropped another 10lbs, and had a very uncomfortable encounter finding out my system does *not* like cabbage - and I need to be careful with broccoli. Every oddity knocks me down a bit, and I'm somehow certain it's cancer.

All this being said - what are some of the ways all of you have learned to cope with the mood swings? I'm guessing that as I continue to walk this road I'll get better at managing and not quickly flip to the worst possible case... it's just tough.

Anyway, thanks for anyone that cares to read all this, and takes the time to chime in 😉

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Don't feel bad if you can't eat brassica plants. MS changed the vegetables I could digest, and I'm a vegetarian! I like spinach and moringa for mild tasting nutrition, and they taste good in smoothies and soups. If you are having trouble getting enough veg, there are some good freeze dried powders.

Still trying to piece together why specifically broccoli and kale affect my gut so badly, might give clues to the genetic variation and pathway that affects my MS (they've got3 totally different genes identified, with more possible)
I understand why the mayo clinic takes a stance against vitamins, but let's face it, the foods we eat are supplemented, and if, like me, have to take into serious account my genetic background. I have meat "allergy" and was pretty un-enthralled when no one mentioned taurine needs to be supplemented for vegetarians. I mean, they put it in cat food, how hard is it to say a good vegan taurine is recommended on a vegetarian diet? But I digress.
Use your desire for health knowledge to your advantage. Pray to be guided to what you need. Hoping that you and your family can reap many blessings and thrive regardless of autoimmune challenges. Glad you found it "early ".

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tabuschlen | @tabuschlen | Jan 6, 2023
In reply to @flowergirl4167 "I thankfully have a wonderful neurologist who won’t prescribe me any DMT’s. He said they’d kill..." + (show)
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I thankfully have a wonderful neurologist who won’t prescribe me any DMT’s. He said they’d kill me. Thank you so much for replying to me 👍🏻

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I have similar genetics on both sides. For example pensilvania Deutch and mennonite. Reconnecting with family two generations back has helped me understand what I'm dealing with as far as medical and food allergies.
Funny thing is that they only found 3 major genomes in Europe, and that people with genetic variation to survive bulbonic plague are more prone to auto immune.

People and medical intitutions that can simply go and take medications, eat food and digest it without a reaction maybe should ask people with the genetic issues that gave them the disease what constraints they have before trying to push a certain model of care.
My reactions got much worse after MS.
Good luck

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kathl | @kathl | Jan 26, 2023

Hi!
Learning from reputable sources is one of the best things we can do with a new MS diagnosis. I received my MS diagnosis in Feb 2021.

There are some amazing neurologists who generously post invaluable MS information on YouTube
Dr Aaron Boster
https://youtube.com/@AaronBosterMD
Dr Brandon Bieber
https://youtube.com/@DrBrandonBeaber
Also immensely helpful are YouTube interviews of the following MS specialty neurologists …
Dr Stephen Krieger
Dr Augusto Miravalle
Dr Gavin Giovannoni
Dr Ben Thrower
Dr Barry Singer

Some other FABULOUS MS educational resources

Multiple Sclerosis Association of America (MSAA)
https://youtube.com/@msassociation
The MS Views and News Learning Channel
https://youtube.com/@MSViewsandNews
The Rocky Mountain MS Center
https://youtube.com/@TheMSCenter
Brain Health Center of the Rockies
https://www.brainhealthcr.org/

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direg | @direg | Apr 17, 2023
In reply to @flowergirl4167 "Am I the only one who has Multiple Sclerosis? I have not found anyone on “connect”..." + (show)
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Am I the only one who has Multiple Sclerosis?
I have not found anyone on “connect” that does.

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I have MS too.

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amimiof4 | @amimiof4 | Apr 18, 2023

May I ask what test result it took for your diagnosis? Doctors have danced around it with me for years. Prayers to you.

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lemartin417 | @lemartin417 | Apr 28, 2023

Hello. I have MS. I was diagnosed in December of 2000. My diagnosis came after I had an “attack” one morning in which my left side stopped working and I had some facial numbness on the left side of my face. Several tests were run and after an MRI of my brain I was sent to an MS neurologist in St. Louis, MO. They did a spinal tap and examined my cerebrospinal fluid and that was the confirmation.

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rbyreddlc | @rbyreddlc | Jan 7 10:48am

I cant remember when I was diagnosed with Multiple Sclerosis but I've had it undiagnosed for more the 15 years and I want to say 5 years diagnosed. Im 36 and have 2 kids

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Becky, Volunteer Mentor | @becsbuddy | Jan 7 10:10pm
In reply to @rbyreddlc "I cant remember when I was diagnosed with Multiple Sclerosis but I've had it undiagnosed for..." + (show)
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I cant remember when I was diagnosed with Multiple Sclerosis but I've had it undiagnosed for more the 15 years and I want to say 5 years diagnosed. Im 36 and have 2 kids

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@rbyreddlc Welcome to Mayo Clinic Connect! I see that you’ve been on the sidelines for about a month and this is your first comment. I’m glad you joined the group!
So, tell me, how did you do for 15 years without medical care? And why did you suddenly get care? You must be a strong person!

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myladybug | @myladybug | Jan 10 10:11am

Can having Dysphagia be an early sign of MS?

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