Recently diagnosed with Multiple sclerosis, and looking for help.
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I was diagnosed with MS in 2004. I stated Avonex interferon the day after my diagnosis and continued weekly injections through December 2021. Under guidance of my neurologist, I stopped Avonex (an immune suppressant) so that I can have a Covid-19 vaccine (an immune stimulant). We agreed that I am much more likely to die of Covid-19 than of MS since most people who have MS die WITH it instead of FROM it. Over the years I’ve learned ways to improve my nutrition, exercise, and sleep. My only advice to you is to remember that YOU have MS, but MS doesn’t have YOU. Also, please remember that MS has been around for a century at least, but the Medical Community still doesn’t know what causes it or how to prevent it. You are your own best doctor when it comes to wellness. The book titled Eat, Move, Sleep is very helpful.
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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 👍🏻
Hi! I too have found connect not so connected but Colleen Young saves the day again. You aren't the only one with MS. I have RRMS. I'm happy to connect with you :).
Thank you 🧡
My neurologist is very highly rated. My DMT has made a difference I'm an ex athlete (boxer, college baseball, actively boxing and weightlifting until being diagnosed).
I lost my balance and have chronic pain. Devastating. The monthly shot actually is supposed to help after a year.? I'll see…
I was dx with MS almost 23 years ago at 25 years of age. Been on Avonex, Copaxon and lastly Ocrevus which was amazing. B cell depletion is the was to go. All my sensory issues went away. Starting on a DMT med asap ass long as regularly exercising has kept me in remission for all these years. Was dx with breast cancer the mo th after my last Ocrevus infusion so no more of that for me. They’ve came such a long way in treating MS since I was dx. I wish you the best!
Am I the only one who has Multiple Sclerosis?
I have not found anyone on “connect” that does.
I do! RRMS for almost 25 years now
Hi I am I have ppms . No on any meds yet but have difficulty functioning. Always tired and my legs don’t cooperate.
Hello @hansa I see that you have found the right discussion t get some help with your MS. Did you mean relapsing remitting MS or ppMS?
Here are some members you can connect with: @beltonite410 @seanmay23. @flowergirl4167. @strongevergreen. They have been busy helping each other so I’m sure 1 more will be great!
How long did it take to get a diagnosis? What treatment plan has your doctor discussed with you?
It’s primary progressive MS. Took almost 4 yrs to get the diagnosis.
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…
–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
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 3×1,000mg 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 😉
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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