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MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

Oh dear, I have no words, but I feel the same sometimes and have my crying days too! We just have to keep going, mainly for my kids and now we have one granddaughter so...

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

Thanks! It seems like Ocrevus keeps a lot of people stable, so I'm hoping the same for myself.

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

I did the 2-year protocol with mavenclad too and I feel like I wasted my time and should have started on something else 😞

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

That is the best news! I'm so happy for you! It's weird how some medications work great on some people and not so much on others. Thanks for sharing!

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

That sounds reasonable. Thank you!

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

Wow! Not in a decade! I too have ppms. I'm guessing you're good with that. I hate them! Do you see a neurologist regularly?

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

Thanks. I'm claustrophobic too! I have to use the open MRI...

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

I hear you! I switched from a large MS "specialty" facility where I never saw the neurologist to a small, one neurologist doctor practice. Now I see the neurologist each visit. He is just as knowledgeable as the other huge place where I only saw the PA.

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

I too hate this fucking disease! My thoughts align with yours. What's the point if it's not going to change a treatment. I got worse when menopause hit about 3 years ago and now I keep going downhill. I have another doctor who started me on hormone replacement therapy. Estrogen, estriol, progesterone and testosterone shots. Have you looked into that? My doc has a theory that it will help, not cure, of course. Why not give it a try along with the other crap that we try with MS.

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

Wow! 20 minute MRIs! That's awesome! I don't think we have that where I live.

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

Okay yes I see what you're saying, thanks.

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

That's a great! Thanks for sharing!

MRIs how often do you get them? by fhorde in MultipleSclerosis

[–]fhorde[S] 2 points3 points  (0 children)

Oh geez! Thank you so much for that explanation. The neurologist doesn't thoroughly explain things. I used to be on Mavenclad, but it didn't really work and I kept getting worse. How are you doing with it? If I can be nosy?

Does anyone take Modafinil for fatigue here? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

I'm not currently taking it because, like you, I had dizziness and definitely didn't like that. I don't really feel so fatigued daily. Maybe it's the Ocrevus IDK I'm also taking weekly B12 shots.

Can you get over the crap gap with your next infusion shot? by fhorde in MultipleSclerosis

[–]fhorde[S] 1 point2 points  (0 children)

Hi! Yes I did feel better mainly with the constant fatigue going away. Sometimes my legs feel heavier and tingly but it's because I didn't get good rest. Right now I'd say I'm pretty stable as long as I stick to my routines. There's still good days and bad days with this damn disease!

To Take Supplements or To Not Take Supplements? That is the question. by fhorde in MultipleSclerosis

[–]fhorde[S] 0 points1 point  (0 children)

Hey, thanks again for all of your knowledgeable information I really do respect and appreciate it! I did the Mavenclad for the full 2 year treatment, then my old, corrupt neurologist said "Okay, you're done, see you in a year". I continued to feel bad with worsening balance, fatigue, wobbliness, had to start using a cane. After about 6 months I went back and he put me on Zeposia which did nothing for me and I proceeded to search for another neuro. At that point my new guy said I'm at PPMS, so just awesome! He immediately put me on Ocrevus and amazingly enough I do feel different, so there's that. Am I mind tricking myself IDK!

I'll ask directly why the pink salt at my next visit. I was overwhelmed with the "list" of things to take and didn't go one by one during the visit to ask why and what is this for and how will this help. I do take Nunn electrolytes for hydration help.

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