Thank you everyone!

[Jesmcd2]

For making me realize what was happening. Its almost the same thing that happens when l take any steriods, steriods are worse tho! 😢 lm pretty sure if l take O again it will be.🙁 Yeah me, to think l thought l could stop being a freak of nature! 🙃

So emailed my neuro,... nurse.. back and forth... 'pain isnt on the s/e list' ... 🙁 'ok? But it happened, still happening.. " alot of back and forth!

Pretty sure its in my Neuros hands now...

Bigger question? What next? Take Ocrevus, and take mega pain meds after, because its been working? Orrrr Switch to? IDK ??

🤗💕🌠

Yall are the smartest! 🙂

[kdali]

You just got out of bed. I don't think today is a good day for deciding what's next. This is a hard one for me because I had issues with it myself, and I know you're in a tough space too with few med options. You also may have to jump through the hoops of ruling out some other issue if your MD doesn't believe it's the med. Lots of ifs and it will make you crazy, so I think if you watch some Sponge Bob you'll be in a better place and the rest will work itself out in time. You do have plenty of time, you just got the infusion.

[Jesmcd2 CommunityAmbassador in reply to kdali]

I like having my lil duckys ina row 🤣 even if they dont float! 🙃 and convincing my neuro? He should know by now🙂

And no My Little Pony? 😂 🤗💕🌠

[kdali in reply to Jesmcd2]

I know, having a plan is great, but even if you did choose another med right now, you have to do testing and get approved, yadda. You shouldn't have to convince anyone what NO means. My Little Pony is creepy🫣 My kids love it 🤣

[Jesmcd2 CommunityAmbassador in reply to kdali]

Wha! You dont like Glitter Pony? 🤣😂🤣 Think thats creepy? Mine liked Sailor Moon! 😭 And Barney🤢Oh, pretty sure l went back to the round table🙂 While they figure out what to do with me🙁🤣

Need a Barney tape? 🤣🤗💕🌠

[kdali in reply to Jesmcd2]

NO! My bff sent me a Barney movie and is mad we have not watched it. I told her they were scared of dinosaurs 🤣

[Jesmcd2 CommunityAmbassador in reply to kdali]

🤣😂🤣 Aww cmon! Just an hr tape, with an addicting song! It'll beee fuuunnnn!!! 😖🤣😂🤗💕🌠

[hairbrain4]

I have found that I have pain mostly on days after I have eaten surgary foods and/or foods high in carbs. Sugar makes my joints hurt & the ligiments attached to my bones which actually makes it feel like my bones hurt, but since our bones don't have any nerves that would be impossible (so I was told by my neuro). Since the first of the year I have temporarily gone off all sugar (as part of a 21 day prayer & fast at church) & I have no pain any where. For the past 2 years I have watched my carbs but not the sugars. It's amazing how much sugar is in everything we eat that we don't grow ourselves. This was just a thought. I pray you can find answers.

[Jesmcd2 CommunityAmbassador in reply to hairbrain4]

Congrats hairbrain4 !! Im so glad that the pain is gone for you! And your right, l should watch my sugars more🙂🤗💕🌠

[hairbrain4 in reply to Jesmcd2]

🤗♥️

[Sandydemop]

Hi Jes, i don't think you should make any decisions right now or by yourself. PS, steroids made me almost go over the edge. i get it.

[Jesmcd2 CommunityAmbassador in reply to Sandydemop]

Oh no, l make all decisions with my Neuro ! Everyone should! 🤗🤗💕🌠

[BlanketTime1]

i'm glad you're looking after yourself.🤗

[Jesmcd2 CommunityAmbassador in reply to BlanketTime1]

Hope you are to! 🤗💕🌠

[leking1]

Hi Jes, I am so glad that you are taking care of yourself, and that you let your Dr. know what happened. I am especially glad that you are back to being you! Don't try to decide today, rest and heal. And please remember, you don't have to do what your neuro says. If he disagrees with something you know to be true, trade him in on a new one, and try again. It is important to remember that this is your body/health/life!🤗

[Jesmcd2 CommunityAmbassador]

Yikes! Just thinking about training a new doc is scary! 🤣 Thank You!🤗💕🌠

[twooldcrows]

so sorry for all of the pain...do they really saying it is caused by the infusion ??? wow ...keep us in the loop ...love and happiness...

[Jesmcd2 CommunityAmbassador in reply to twooldcrows]

It has to be, because nothing is different except that... 🙁 and l will! TY🤗🤗💕🌠