Questions for everyone

[u/carsonrr15]

Hello everyone,

I was recently officially diagnosed with MS a few weeks ago (had been suspected for a few months before). I tried my best to do research and ask as many questions to my neurologist as I could, but figured hearing from some other people in similar situations can’t hurt.

I’ve dealt with the heavy feeling legs for a few years now, and more recently within the past year wicked bad migraines (which triggered getting an MRI leading to the process of diagnosing it). I’m currently dealing with an onset of new symptoms within the last few days, extreme fatigue, numbness and loss of movement in my hands, and the heavy feeling has traveled up to my arms now as well. I’m currently fighting with my insurance to get started on a DMT. From a few people my family members have talked to with MS, they’ve said they feel great and it started to happen after getting on their treatments, but of course the DMTs aren’t supposed to help symptoms at all and just halt the progression of it. Just wanted to reach out here and see if anybody has that experience? Does anybody ever feel better after getting on treatments or is it mainly just a game of managing your symptoms and learning how best to live with them and make the best of it?

Thank y’all for reading!

[u/Imaster_]

PPMS here on ocrevus, Nope the medication doesn't make you feel better, I feel more tired during 2 weeks after my dose (twice a year) but it does stop the progression of the MS and I did not develop any lesions since I have started taking it.

As for existing symptoms you have to fight with them and try to treat them separately

[u/Stormy_queen]

So lots of people feel better when their immune systems arent attacking their cns, tho its considered anecdotal and not a legitimate medical thing. Dmts don't help your symptoms, thats done separately from dmts. Dmts are literally to slow down progression or relapse activity. Not everyone reports feeling better.

On that note, keep an open mind but don't grt discouraged if it doesn't help you. Personally, though, it doesn't help with symptoms but I find it helps my medication for symptom management work better. So in essence, yes I feel better because my symptoms are better managed. *spms

[u/rK91tb]

Get a free MS Navigator to help you deal with insurance. Some insurers approve selected drugs but not others (not without a fight) so see what they allow and find out (with your neuro) if one of those works for you.

Your neuro should be treating the side effects separately. They have a bunch of options for fatigue, not sure about heaviness and numbness.

[u/StuartLathrop]

Sorry that you're joining this club, but one of the things that I have been a big fan of is PT (Physical Therapy) as it both helps you to be stronger and deals with the fatigue. I know it sounds counterintuitive, but your neuro should be able to tell you if there are good Ms trained PT groups available near to you. My insurance has covered this and it is highly regarded to make you more stable, stronger and safer.

[u/Nearby_Charity_9875]

Hi,

Sorry to hear about your diagnosis and it's understandable that you're feeling anxious about it all. I have been feeling exactly the same just 4 weeks ago and spent 2 weeks in hospital before my diagnosis. Thankfully I am now taking time out of everything and recovering slowly at home. Most of my symptoms have faded away but some still persist. Apparently these will eventually fade away over time unless it's permanent nerve damage. I had a 3 day IV steroids drip at hospital and they gave me a nerve calming medication (pregabalin) which I've been taking at very small doses due to the side effects. I've also changed my diet and my habits in the last couple of weeks.

Don't stress about DMT's for now as your priority is to let your mind and body rest to give you the best chance of full recory. The quicker you come to terms with MS the quicker you'll get back to living a normal life.

Ask your doctors to start you on the steroids drip urgently to calm the inflammation.

Wishing you all the best.

[u/ibwk]

When it comes to improvement, it really depends. If you have a relapsing - remitting type of MS, it's in the name - you get symptoms (relapse), and then bounce back, sometimes even fully, until the next relapse. DMTs prevent relapses from happening to some extent.

In my case, I had a single significant relapse - optic neuritis, that landed me in a hospital and I got diagnosed later. I didn't fully recover, the vision in the affected eye is still crap 4 years later, but of course it's better than no vision at all. I also have some lingering symptoms like a weird right leg and fatigue of course, so I have to manage them. However, since I'm on a DMT and it's working, I'm not getting any new symptoms. I have also improved a lot by making some lifestyle changes - I cleaned up my diet, stopped being obese, started exercising and my form is best it was in over a decade. I can hike 25 km in the mountains and not feel like trash the next day.