I had my MRI with and without dye on the 17th. My Neuro, says we want a stable MRI to go by. Me too! I got my results yesterday, and yea me! I have more lesions! Not only that, lm lit up like a flippen christmas tree! I have flares going on in my Cerebellum, by George. And in the Pons, which is new.
So much for a stable MRI😢 and does this mean ocruvus isnt working anymore? Or is it working, and it l could be 100xs worse?
I just dont know anymore!
I really hate MS,
Im going to go shove more marbles up my nose to fill up the spaces now! 🤣
🤗💕🌠
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Jesmcd2
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Gallbladder surgery. The CT showed it was the size of two fists. And the surgeon said it was the biggest he had seen since he started practicing 41 years ago. & there were 2 stones that were 2.5 centimeters. My husband was also septic. They caught it just in time before the sepsis took over.
Wow! My last boss just had emergency gall bladder surgery which was not fun to recover from. So I really feel sorry for your husband. And now you have your fireworks as well. Goodness gracious. You both needs to have a movie marathon with your feet propped up. I sure wish you both the best.
A dear friend gave some to me, so l would never lose all my marbles! I have them in a jar to remind me to smile! You should get some, and say they are from me! 🤗💕🌠
wait till you talk to the doctor...love you and others do too ...we know this goes on so just wait and talk to the doc....love and much happiness is there just look around ...loves...
I dont do steriods. 😐 They are bad, bad bad bad 🤣🤣 and to be honest l dont even feel like lm having any 🤷♀️ Only thing l cant do is side step anymore.. 🤣🤣 and l figure its cause lm old🙃🤗💕🌠
That's hard news to digest, especially when you can't talk to your neurologist yet. I wish we were back in the days where you could call your doctor when you're worried and he could just talk to you! Medicine is so impersonal now. I know it's scary, but maybe you'll be one of those people who have lesions but don't get symptoms from them. Hang in there.
Before my last MRI’s my Neuro said we will go ahead with your next O infusion unless something shows up on the MRI. If something shows we will have to change your meds again. Keep after your MD. Enjoy a Merry Christmas & don’t lose your marbles. 🤣😀😊
The Neurologist could/should(?) recommend a different DMT that works better for you IMHO (Does everybody know that this means "In My Honest Opinion?" - it may be a common term these days).
.Is there any alternatives to prednisone for the flare. I know prednisone affects bones & messing mine up. Maybe nonprescription.Keep your marbles & prayers for your recovery
There are! And l would have to look it up because l forgot what they are... 🙊 but when l talked to my neuro on friday, he felt that it was prob over, as it was on the 17th 2wks, and no symptoms🙂🤗💕🌠
From what I have read here, Ocruvus isn't a mickey mouse drug. I sure hope the answer is that it is working for you and that the lesions stay quiet and disappear!!
He said stable, Jes! I don't think MS heard him 😭 I'm very sorry for your terrible news, and it sounds quite ridiculous 😵💫 I don't know anything, but I'm thinking not going back to copaxone was probably a good idea. Could you be making antibodies to Ocrevus 🤔 I hope your follow up appointment goes well, and until then you are well entertained with your marbles and humor 🥰🙏
Humor is the only thing that gets me thru sometimes! 🙃 Cause this MS thing is about the stupist thing in the world! Besides, its either humor or anger. And no one wants that... 😐🤣🤗💕🌠
I’m sorry to hear your DMT isn’t working anymore. Hope they find something that works. My neuro knowledge is limited to where my black holes are. Can you explain the pons thing? Enjoy your posts you seem to have a sense of humor!
my.clevelandclinic.org/heal... you go! I will stop being lazy! 🤣🤣 There are alot of places in the brain that affect balance tho. The brain is so complex, and all connected, 1 way or another. (My opinion only)🤗💕🌠
Wow, that's a lot to take in. So sorry you are having to deal with this. Were you able to discuss it further with your neuro? I totally agree with you. It's hard to know if it's the Ocrevus that stopped working of if it's just M.S. doing what it wants to do. Are you going to continue the O? I'm also with you on the steroids. Over the years, I have had five rounds of massive steroids, and I have severe osteoporosis now thanks to Solu-Medrol! Take care! Sending a big hug your way!
dang it Jesmcd2! I’m so sorry you are lit up like a Christmas tree.. that was not the results you wanted to hear. They are asking me to get my thoracic spine done now as i have been having more falls and Uthhoff phenomena this year… I already had my brain, C-spine, and lumbar spine done.. I’m going in on Wednesday to get her done. I will pray that they help you find the right path to take.. sending up healing thoughts and good vibes🙏🏼🤗
Apparently I dodged a bullet this time with no new lesions causing my troubles.. but what I got instead was a laundry list of bulging, extruding discs and multiple levels that weren’t there 11 months ago. Also, my spinal cord is compressed in three different places and flattened in one area and that is just a thoracic spine… Lol I am fortunate that I already had a pain management appointment this coming Tuesday so maybe they can give me some ideas of treatment options that are not surgery! I am considering all this a huge blessing, but I am so sorry that you’re going through some active lesions. There’s no stress in the world like it. Sending you get the healing thoughts 🤗
So sorry to hear about your back! I know how painful it can be! I have had 2 back surgerys, and neck surgery... if you do need it, listen to your drs! Even if you dont want to! It pays off in the long run! 🙂🤗💕🌠
Thanks for the good advice.. I have a really good doc.. hubby has worked for years in the OR with directly doing pain management.. he wanted me to consult quite a while with him but I was determined to try PT for a long while first.. other docs thought it was ortho in nature..
I know that's the news that we dread; unstable MRI!!! Talk with your Doc and see if changing your DMT could make a difference. Also, (only if feel up to it) get a second opinion from another Neuro and see what their assessment thoughts/feeling may be? 🙏 Praying for you and keep me updated. Blessings and Support Always,. NeeC
Not sure what the guy meant when he said Christmas lights but I thank you for the suggestion on the Cleveland Clinic. I’m really searching for stem cell treatments. I’ve seen some incredible results. Thx
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MRI and Ocrevus
MRI last Thursday 
