True that!: How are you doing with your MS... - My MSAA Community

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True that!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
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How are you doing with your MS? πŸ€”

Mine stinks! Always stinks!🀣 Had Ocruvus on Monday, w/ solumedrol.. the reaction to it, hit me in the middle of Weds. I hurt soooooo bad😭😭 I can hardly turn my neck! I so hate steroids!!

Nough bout me! Tell me about you! πŸ€—πŸ’•πŸŒ 

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Jesmcd2
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2Kiggy profile image
2Kiggy

Sorry to hear of your pain problems... MS does stink. I basically have a right foot that always feels frostbitten or like it has had Novacain. Overheating or overstressing can get tingling going in other places. Extreme fatigue is very upsetting, especially when there is seemingly no real reason to be so fatigued. Last summer I had a full hip replacement, and the doctors figured I would take longer to recover because of the MS, but I ended up pretty much recovering in normal time (to my surprise).

Gorillaman profile image
Gorillamanβ€’ in reply to2Kiggy

I've had both knees and both hips replaced in 2018 Docs couldn't figure out why I had such stiffness and recovery problems, Then symptoms kept getting worse, diagnosed with MS 2020

twooldcrows profile image
twooldcrows

so sorry so they thought it was from the infusion ..wow ...so sad ...wow ...love ya ...may you get to feeling better and no more pain...take care and be safe...

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply totwooldcrows

It's from the steroids, πŸ˜” I just move my head like very slow robot! 🀣🀣 Love ya to! How are you doing? πŸ€—πŸ’•πŸŒ 

twooldcrows profile image
twooldcrowsβ€’ in reply toJesmcd2

i just me with this monster that does at times makes life change for it what ever ...husband went to er yesterday for he couldn't get out of bed keep falling back down ...after what six hours and lots of tests it was vitago ...anyway on some meds that are to help and will go back in for a brain scan for he had a really bad headache and has some growth in left eye ...can't believe we get old and the older we get the bod just falls apart ...so i can complain for i do have my problems with turning head to fast and i can get dizzy but it is something you just learn to live with so here we go ...he was to have eye surgery on wednesday so now we have to call and let them know what is going on so i figure it will be delayed to other time for he can't lay flat and can't move to sit up with out problems...so life goes on ...love and much happiness we will all survive ...take care ...hope it gets better soon for you ...

falalalala profile image
falalalala

I'm doing fine, thanks!

Then again,my fine could be someone else's tragedy

When I hear people complain about getting a cold like it's the end of their happiness forever, I have to wonder how they'd handle a diagnosis of MS or any other disease for that matter.

🀨

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply tofalalalala

Right!! πŸ€£πŸ˜­πŸ€£πŸ€—πŸ’•πŸŒ 

greaterexp profile image
greaterexp

I hope you get to feeling better soon.

2littletime profile image
2littletime

πŸ˜žπŸ’–πŸ™

kdali profile image
kdali

I’m surviving the crap gap much better now that I’m doing what I should for myself. A few weeks ago was a new low for me and quite scary. I’m sorry to hear that about your steroid reaction! I hope this year is much better for you, and I acknowledge that the bar is low πŸ˜” You deserve a break!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply tokdali

I'm sorry that you hit that place kdali and so glad that your coming out of it!!! Take care of yourself! So you can take care of those sweet ones! πŸ€—πŸ’•πŸŒ 

kdali profile image
kdaliβ€’ in reply toJesmcd2

TyTy! πŸ™πŸ₯°

kwhompus profile image
kwhompus

I've never had a negative effect from Ocrevus or the steroids. I hope they can find what works for you with out the troubles. AS far as my MS (PPMS) it seems it gets worse or the symptoms get worse by the month. To be honest, I'm getting a concerned about whats to come. Enjoy life by the hour and keep a clear conscious.

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply tokwhompus

Hang in there kwhompus !πŸ€—πŸ’•πŸŒ  Hope you feel better also!

Weather. Dealing w weather. Ugh!! Temperature fluctuations. Rain/snow-body doesn’t like it at all.Equal opportunity hot and cold. Both get me differently.

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toGoldilockssearching

You got that right! πŸ˜” I'm under a blanket trying to stay warm and not move! πŸ˜¨πŸ€—πŸ’•πŸŒ 

Yes t hate steroids also, my neurologist thinks it's funny because most of her patients beg her for them and I fight taking them as long as possible, sometimes even just touching out exacerbation till it subsides. In fact have only had steroids when first diagnosed, and when I had optic neuritis, otherwise just struggled through episodes. Robert

hairbrain4 profile image
hairbrain4

Did you know that you don't have to take the steroids before the Ocrevus? The steroids are just a precaution to stop any reactions you may have to the Ocrevus. You can have your Dr omit the steroids.

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