Last reply 2 months ago
Overwhelmed

Well. They thought it was a pinched nerve. I couldn’t walk. It was so weird. I couldn’t feel anything waist down and it felt like I was wearing compression hose. My legs were on fire. I kept falling. I had “accidents”. Things were blurry. Nothing made sense and they kept medicating me. So i asked to see someone different. They kept doing MRIs of my lower spine thinking I was making it up. Until I finally cound a neurologist. My first lesion was found in my spine. I have 6 others. Brain stem. Brain white matter. I don’t know where to start. I work full time and that has been a challenge. I am unsure where to start. I have had 5 days of steroid infiustions first. I have gained like 40 pounds. I am starting a new immunosuppressive therapy next week, Ocrevus. My insurance is fighting me every step of the way. MS is expensive. What a scary time in life. Anyone else feel overwhelmed like this when you first found out? Star

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calliems2002
2 months ago

@astarte_aurora_rother you sound exactly like me with my last flare. I’m still waiting to review my last MRI results but I am sure I have a new lesion on my spine. All your symptoms was exact to what I experienced. Unfortunately MS is nothing but a rollercoaster and we never know exactly when we get on the ride, how long the ride is or exactly where the track leads. I was diagnosed young and yes I was overwhelmed…but I did balance out…it can still be too much but I try to reset as much as I can. I worked fulltime almost 60 a week for my whole MS journey up until 6 months ago…you have to be honest when health and work cannot balance anymore


calliems2002
2 months ago

The journey needs lots of rest…physical, emotional and mental. The insurance company may have push back but they can not deny you so just keep strong.

Lots of friends here and tons of support ❤

How long do flares last? Also, does the clumsiness and weakness remain after the flares subside? This is my first flare so the dr says I am lucky that it presented in my spine and I they caught it so early. I don’t feel very lucky at the moment , but I am sure the silver lining is that I can start treatment going forward.


smack
2 months ago

The silver lining is you have a dx. Steroids should lessen the inflammation and hopefully you will start feeling better soon. Good Luck!!


calliems2002
2 months ago

astarte_aurora_rother each MS flare and person is different really. Damage can be restored completely or there can be residual effects. Attacking the inflammation quickly with lots if rest heightens the potential to restore completely. Not a clear answer but sometimes things are not completely straight and arrow. Don’t get down I know it’s difficult but with time, rest and a good doctor you should feel confident soon 😊 just listen to your body and stay positive!


mlgilber1
2 months ago

I was diagnosed last summer and had a major flare where I couldn’t move or feel my left leg and was numb from the chest down. Steroids were making it worse so they did plasmapheresis and I regained use of my leg, but still needed a walker. They told me my MS was aggressive and put me on Ocrevus and I’m doing so much better. It does take awhile (about a month for me) for insurance approval. I haven’t needed my walker since starting, lots of symptoms have improved, and some disappeared. Best of luck and I hope you have a speedy recovery!


beckyannej
2 months ago

You sounds just like I was when I had my first relapse. Hold in there it does get easier.
I have 2 dogs and make sure I do lots off walking every day, and initially had a morning and night routine of doing squats every morning and night which really helped strengthen my legs again and helped get my balance back!
Hope everything gets better for you xx

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