No possible meds

[Newfound]

Met with my MS doctor yesterday, and reviewed my MRI. No changes since 2013. Good I guess, but she does not suggest any meds, as nothing works for non active SPMS. She has patients that have tried Ocrevus, but it does nothing if the disease is not active. I’m so depressed, as I continue to get worsening disability, no matter how much I work in the garden, row, and do normal housework. She has signed me up for PT, and occupational therapy, and maybe that will help a little. I want to be able to be useful, and not just a burden to my family. I want to dance!

[Hidden]

PT did help me. I was supposed to but never did OT. I hope they help!

[greaterexp]

We understand the feelings that come with worsening disability of any amount. Physical and occupational therapy can do quite a lot to keep us moving and functioning better. Keep dancing in your heart.

[mserinNJ in reply to greaterexp]

I get PT, and it helps. What do get from OT, and how does it help? Please fill in the details.

[ahrogers in reply to mserinNJ]

PT works on strengthening and general exercise where OT works on functioning such as helping with any needed modifications to perform specific tasks or activities of daily living.

My previous neuro told me MRIs aren't everything when mine hadn't changed but my symptoms were progressing. Maybe your MS does have some activity and could benefit from Ocrevus. I really wish there was a simple test to determine exactly which type of MS a person has rather than just following symptoms and MRIs. Not quite sure if mine is PPMS or RRMS but either way Ocrevus is definitely helping to slow it down.

I hope PT and OT help!

[mrsmike9 in reply to ahrogers]

Plus OT will help fine motor skills.

[jimeka]

Hi Newfound, when you find the secret to being able to dance at our age, let me know, Blessings Jimeka 🦋

[rjoneslaw]

pt and ot will help

[RoyceNewton]

I suggest a second opinion. If it does nothing that is good what exactly does she expect it to do? Either way I am NOT any type of doctor so all I would suggest is a second opinion

[Newfound]

This is my second opinion. The first one was from a neurologist at the IMSMP in NYC. He is the one who suggested Rituxan or Ocrevus, and said since Ocrevus was not tested for non active SPSM, no one knows if it will work, and maybe it will help. My local neurologist said it didn’t work for any of her non-active SPMS patients, and quite a few had tried it.

[Beckylp54]

Hi Newfound

Sorry to hear about how your feeling. It's hard living with this rotten disease and sometimes downright depressing! I get depressed a lot dealing with MS. But DON'T you ever give up!! We all love YOU! Stay strong. PT may help. I have found adaptive yoga has helped me physically get stronger and helps me mentally and emotional. I am praying for you. God's blessings❤becky

[KarenUSA]

I find the MS Gym video exercises helpful for my secondary MS. Check it out..

[IFwczs]

I agree with RoyceNewton. Get a second opinion. My neuro says Ocrevus is the only MS DMT to slow down disability progression. I have read somewhere that Ocrevus doesn't work for SPMS. However, I have read SPMS patients' reports that Ocrevus helps them tremendously.

[MarkUpnorth]

You CAN DO Healthy Eating. Pick a diet, but you have to really commit to it. I do the eliminate processed foods diet, mostly fruits and veggies with lean meat, fish...I'm actually getting better! Little by little. Definitely not getting worse. And off meds, I feel is a good thing to some extent. BUT, manage your Mitocondria by what you eat!

[carolek572 CommunityAmbassador]

I doubt that you are a burden to your family, Newfound . It is sad to no longer do things that you once could do without a thought. For me, I adapt in order to continue to do things. They are not done as quickly as before but they are done. OT can show you ways that these things can be done safely, and PT will show you how to maintain what you still have.

Stay Positive, and Keep Smiling,

Carole