Last reply 1 month ago
please HELP!

Hi my name is Dominique. I went into the hospital last week because I had some type of stiffness, weakness on my left side. I instantly thought it was side effects to my medication, but long behold, after a MRI, they found lesions in my brain and spinal cord. Being diagnosed with RRMS and being a police officer is scary. I love my life; husband, kids, and my job. I got steroids when I was in the hospital, and the symptoms went away. After being out of the hospital for 5 days, those symptoms are coming back. I workout out hard yesterday. As soon as I was done, it started back, not as stiff as the first time but I’m scared. I’m on medical leave right now, and my Neurologist states I could live a normal life and go back to work. He’s gonna put my on Mayzent. I have a few questions:
Are there any law enforcement in here with ms?
Do hard workouts cause a flare up?
Is it normal to have a little flare after being hospitalized?
Has anyone ever taken Mayzent?

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vixen
1 month ago

Hello @dalex, great that you’ve found Shift already! Firstly, is it a confirmed diagnosis? If so, this would be the most rapid diagnosis I’ve ever encountered! Did you have a lumbar puncture as part of the process, and have they linked this event to any other historical symptoms?

I would say, it’s really important to step back a bit at the moment; being diagnosed doesn’t mean you can’t work and live a normal life, or have families and make plan. But it will mean that you might have to modify lifestyle, or make some subtle changes, to give yourself the best chance at managing the condition. You’ve clearly had what is called a ‘relapse’ and he steroids will boost your recovery. But often, the after-effects can unfold over a longer period of time, sometimes days, sometimes months. In that time, it’s wise not to push yourself too hard in terms of exercise as your body will still be recovering. That’s probably why your tough workout has caused a bit of a flare. It’s great that you work for the force, and perhaps you cold ask to have an Occupation Health Assessment once you go back to work again.

The drug – or DMT – you will be taking – Mayzent – is called Sipinimod in the UK and, as a newish drug, hasn’t been licensed yet. (The US is generally one step ahead is licensing new medications). Another bit of advice; if you do research, only ever use official sites, like this one, MS Trust/Society. It’s easy to google and get completely overwhelmed, or get false information. Stay strong, keep asking questions, and dont’ worry. You got this! 🙂


dalex
1 month ago

@vixen Yes, I got a lumber puncture in the hospital. They ruled out any other possible diseases. All my blood work and fluid from my spinal cord was clear. My eeg also was good. I had only one follow up appt so far where we discussed the medicine and flare ups, but I’ll be calling my Neuro to inform him about my symptoms. Thank you so much for responding, I’m literally freaking out.


stumbler
1 month ago

Hi @dalex , good advice from @vixen above.

To answer your questions :-

I can’t help you with law enforcement, but I can understand your concern for your future career. I’d love to say that you’ll be only minimally impacted by MS, but it’s so unpredictable. But your healthcare to date seems to be excellent, so be optimistic.

Hard workouts can make your symptoms “flare”. This is probably due to a rise in your core body temperature, so the flare should be short-lived, as you cool down. Going forward, you might want to consider a cooling vest, to allow you to continue with the intensity of your workouts.

The post-hospital flare could be the “Steroid crash”. With Steroids, you can enjoy some immediate euphoria, but this is short-lived, hence the crash. Alternatively, it could be your MS responding to the stress/worry of the diagnosis. Stress is not good for MS!

Mayzent® (Siponimod) is the latest Disease Modifying Therapy (DMT). In Europe, it’s only been approved for Secondary Progressive MS (SPMS), although the FDA has granted it a wider license. As it’s so new, user experience is limited and you’ll need a response from someone in America.

Take care, rest up and relax.


henrietta
1 month ago

@dalex Getting diagnosed is quite a shock especially if you’re not expecting it at all (I was initially overwhelmed by diagnosis and I’d been expecting it) so first up I’d say try to relax as much as possible and take your time coming to terms with it. Try to remain as stress-free as possible too as there is a school of thought that says stress is bad for us. As @vixen says, it’s great you’ve found this site, and taking a step back as you navigate your new normal is a good idea.

I find any exercise which makes me hot exacerbates symptoms (don’t know if everyone gets that) so instead of cycling (for example) I swim. I find cold showers help too.

Another useful thing to do is check out Dr Aaron Boster’s videos on YouTube

Anyway hope this all helps


itsmewithms
1 month ago

Great advice above as you will find on this site. There is also good information on the MS society sites and also a few other select sites. One I like is Dr Boster’s site, he is in Ohio and setting up a MS center in Columbus. I am about 7 hrs North of you in western Wisconsin. I’m tempted to check him out myself but have good care at my current center and have gone to Mayo in Rochester for second opinions.

With a good diet, life style and an effective DMT hopefully the impacts of MS are pushed off for years. Of course exercise, not smoking and keeping your D levels up helps a lot. This is Dr Boster’s message to the newly diagnosed – wish I had heard it back when I was diagnosed 15 years ago-

Good luck- glad you found Shift MS 😉


dalex
1 month ago

@stumbler @henrietta @itsmewithms Thank you all so much for the advice. I broke down so much yesterday that didn’t even recognize myself. Im usually strong, brave, and the one who allow ppl to cry on my shoulder, but this new news changed me overnight. I will definitely get a cool vest, relax, and take it easy. My over thinking just got the best of me. God, I’m so happy I found shift.


amy_hauber
1 month ago

Hi @dalex,
I’m sorry that you are going through this.
It’s a shitty disease and I’m sorry that we have it.
Try to stay as positive, healthy and active as you can and you’ll do well.
Sending hugs,
Amy


itsmewithms
1 month ago

@dalex it sounds like you just needed to let it out…that is healthy and natural and will likely need to be done a few times through this acceptance phase…rail against the gods if you must 😉 do not go gently into that good night…kind of my motto. I try to push as much as I can each day.

As far as tomorrow…it will come, you will adapt and figure it out. If you need anything or have questions someone here will have been there and they will have advice 😉


dalex
1 month ago

@itsmewithms Thanks so much


suzymoo
1 month ago

Hi. I’m a Police Officer too, and was diagnosed with RRMS in January this year. I am lucky as I have no symptoms and remain on fully operational front line duties. My Force have been really supportive and as long as i remain fit & well, nothing at work will change. I still have all my authorities (response driving, Taser, public order etc…) xx

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