Pretty sure I'm good on this one! ππ€£
So I'm up for my 6mos MRI on Fri. Yeah me. π Crossing finger's, no lesions... As I ππ€£ figure the odds!ππ€£ Then I actually see my neurologist next week.
Who else has appts this month? Let us know!!
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No MS related Appts. for me! I will think good positive thoughtsππ and a few prayers for you my friend. I spent my 3+ hrs in the tube last March. No changes for me in number of lesions, size or shape of existing ones, will ask Santaπ π to bring you goodπ news!
I'm so happy for you CalfeeChick !! That's wonderful news!! ππ And TY!π€ππ
Love the cartoonππ
Just saw my neurologist yesterday...no new lesions and no change. My thoughts are with you. Blessings Cynthia
You are due a good report π I just have another pressure check with the optho Fri to follow up on the little steroid dose from my infusion. My eyes donβt like it π
I didn't take the steroids the last time and had no problem during or after kdali might be something to talk to your Neuro about? Are your eyes ok? ππ€ππ
I can see fine, but Iβm none too excited about being told Iβm a hyper responder to steroids all of a sudden. I wasnβt in March. Whatβs more confusing is that my pressures are the same now as they were when I was started on drops for glaucomaβ¦but now itβs ok because itβs the steroids causing it π€·ββοΈ Itβs not even my regular optho I see tomorrow, and I already feel bad for the questions heβs going to have to deal with π€£ I have considered your success and wondered what the steroid is for if the target cells are at zero when I get my infusion. Iβll ask my neuro in a few months. Besides my eyes, Iβm leery of lifetime steroid use.
Sending you positive mojo for a good outcome from your MRI! You are overdue for a good experience!
Just had my Ocrevus infusion #9. So basically starting year 5. Iβll have my six month checkup with my neuro next month.
I just started singing love potion #9 π€£ππ you will have to keep us updated Raingrrl !!π€ππ PS thanks for the song!πππ€£
Hope all goes well with ur MRI π
Iβm praying no new lesionsππΎ
I had a MRI without and with Gadolinium contrast yesterday (Wednesday). Then saw my Neurologist and he said that there were no changes. The Lemtrada DMT seems to be working. Good news.
That's great news sashaming1 !!! I'm so happy for you!!! I'm glad that lemtrada works for you! π€ππ
I just had my yearly MRI last week and there are no new lesions (although the report did note some βblack holesβ π). I see my neurologist virtually on Monday for my six month appointment. Next Ocrevus infusion is in January
I hope it goes well. Nothing here until January and February.
No news is good news!!! βΊοΈπ€ππ
I have an appointment for a hep A vaccination and i got a flu shot. Do great on your mri!!! An all clear will be a great Christmas present
Yea on vaccines! π And it would for sure!! π€ππ
Merry Christmas! I like the cartoon I'm going to the neurologist today and infusion in January
I JUST saw my NP a few days ago and have labs next week to finally get everything in order to start on the Aubagio again hopefully by the end of the month. Last MRI's at the end of September showed significant progression with new lesions on brain stem, in brain and on cervical spine. I am beginning to wonder if maybe i was mis-Dx'd from the start and should have been classified as PPMS. I have never had an MRI that has not shown new lesions. Ever. No matter what DMT I have been on. I was Dx'd in 2015, and since then i have switched meds, this will be the 5th time because none of them have worked. IDK? Adding this to my list of questions to ask the doc next month... UGH.
I'm so sorry for the new lesions wolfmom21fl π I know how frustrating it can be, happens to me all the time!π As my Neuro tells me.. no DMT can stop them... We just hope they will... Then I want to punch him!ππ€£ βΊοΈ As far as RRMS and PPMS there are more DMTs for RRMS.?? Hang in there my friend!π€ππ
yeah.. i know there are no "guarantees" to any of this but dammit man.. I am so over this.. I dread going for the MRI's now because I know i am going to hear "well there are new lesions here or there" this last one was quite a shock tho.. Brainstem lesions were NOT expected and I guess thats why it threw me for such a loop.. Iyt definitely explains a lot tho..
I hear ya! It suuuuccckkkksss sooo bad!!! π€£π I just expect them now π and go with it... Not alot I can do, except argue with my Neuro π which I do alot! π€£ If you think you're having Relapses or new symptoms you should call your Neuro! π€ππ
Yeah.. I am here thinking I am unsure if I ever hit remission, to be honest. In fact, I am questioning whether I was mis-diagnosed to start with. Like, maybe I did not have RRMS but instead had PPMS, because NONE of the DMTs I have ever been on have stopped this or actually put me into full remission. Tysabri came close I think? Then my JCV status went bonkers and I had to come off of it. I was Dx'd late 2015.. November.. I will now be starting my 5th DMT. 5 DMTs in 6 years and none of them have really worked wonders
That's a lot of DMTs in 6 yrsπ€ I'm not a Dr. But it seems like there is no time for it to work? Idk have you checked out Ocruvus? You can also get a second opinion, or switch to a different Neuro if you don't feel good about the one you have!π€ππ
I hear ya.. BUT- I was on Tysabri for a while and it was actually kinda helping.. I was having new lesions showing up and some of the present lesions were actually looking like they were healing.. then my JCV status exploded.. I was kinda borderline when i started at .40 and I got sick with a cold one of the grandkids brought home with cooties from school.. Well, the next thing I knew my white counts were at 25K and i was running a fever and when i went for labs my JCV status had tripled.. so they pulled me off of the Tysabri.. Nothing since then has done any good for me at all. The Mayzent was what I was most recently on and is a very strong DMT. I think i am too old for this stuff honestly. It tanked my immune system so badly I was sick all the time, had numerous infections like I broke a nail and quicked it so it bled.. next thing i knew the cuticle was infected. Took 6 weeks of daily cleaning with peroxide and rebandaging to clear that up. Broke a tooth and that IMMEDIATELY abscessed, within 24 hours and my system would not respond to 2000 mg a day of penicillin. Was having herpes outbreaks every 3 weeks and not being able to eat, acne like a teenager, (i am 63), my white counts were down to 4K overall and thats when my red counts took a nose dive too.. severe nose dive.. Its possible that drug may have done something to my kidneys because my white counts, 7 months later are still not back where they should be. I am going for labs tomorrow to see how my iron and red counts look and I think there may be a CBC waiting there from Neuro as well
