A new type of MS

[mbrooks20]

I have been diagnosed with Relapsing-Remitting MS. I got an email from my neuro that I have Primary Progressive MS. Has this happened to anyone else? She told me to call and make an appt. if I want to discuss this with her or discuss what it is.

[All7]

Mbrooks20...

I can imagine how confused you must be. There’s a difference between the 2 diagnoses; you need to know the course of treatment. Definitely make an appointment with your neurologist and get the facts. Take someone with you if you can. Two sets of ears are always better than one! Good luck and keep us posted...

[mbrooks20 in reply to All7]

She said that she is wanting to try Ocrevus. She had heard wonderful things about it and has several people who are on it now and it has slowed it down. I told her lets go for it if it works.

[All7 in reply to mbrooks20]

Hopefully it will...it has stabilized many patients. I’ll be taking my 4th infusion in October and honestly have not had a side effect issue.

You may want to ask about physical therapy if you’re not having it already. Keeping our core and muscle strength is really important.

Bottom line...this disease sucks, but we all do whatever we can to get through every day!

[FearlessMsMimi]

mbrooks20 its important to remember your doctor always has your care as their #1 priority. If he/she recommends a new med, you have looked at all the information on that DMT and feel comfortable with it then by all means start it. My neurologist always said there will come a time when we must move up the DMT chain of meds to help control your illness but it is always our final decision when it comes to saying yeah or nay. Good luck my friend and I say go for it!

[IFwczs]

I think the diagnosis distinguishing RRMS from PPMS is not important. I was diagnosed with RRMS five years ago when it's clear to me I have progressive MS. I myself know that I have not had relapses, that I really slipped and fell on ice just because it was dark and solid ice on the ground, and not because I was having a relapse. But do go on Ocrevus. My neuro said it's the only MS DMT to slow down MS disability.

[mbrooks20 in reply to IFwczs]

That is what I have heard and seen on Youtube. Some say that they never have a relapse after starting it.

[Bodega1939]

After reading the other responses, mbrooks20, I think you have received good advice. I do want to say that I had RRMS for years. It was so "mild" I didn't have major problems. However, now I have secondary progressive, and I am really paying attention. It has taken some time to sort it all out and I am still learning. You have done well to contact HealthUnlocked. It is a repository of much good information!

[mbrooks20 in reply to Bodega1939]

I have to agree. Everyone here always has great advice and tips. I am so glad I found health unlocked.

[ahrogers]

I was originally diagnosed with rrms but my new neuro thinks it is probably ppms. Unfortunately there is really no way to know for sure but symptom wise and the course of my disease would lead me to lean toward ppms too. Ocrevus is the only drug approved for ppms at this time. I have been on it 3 years and it has definitely slowed things down much better than the Gilenya and Rebif I took before.

I think it is odd your neuro would give you this info by email rather than in person to discuss what it means for you. I am not sure if either of the 2 recently approved oral medications are approved for ppms but I would prefer to start with Ocrevus and give the others more time in use to see how people do on them.

Good luck to you, I hope it slows your ms or even improves some of your symptoms as it has done for some!

[JTZES]

From what I've been told and seen your doctor considers you to be in the most severe stage of MS. Are you having frequent exacerbations? Do you know if your JVC positive? If your not then Tysabri is a better medication than Ocrevus. It's 99% effective at preventing new lesions the highest % on the market.

Speak with your neurologist regarding your current condition.

Is your neurologist a specialist in MS care? If not get a second opinion.

Good luck with your conversation with your doctor.

Our thoughts and prayers will be with you.

[mbrooks20 in reply to JTZES]

She is a specialist in her field. I have been in an exasperation for over a month and prednisone is not helping much. We are switching to iv steroids now.

[carolek572 CommunityAmbassador]

Yes, I was RRms but have been re-diagnosed to PPms. I believe this happens more often than you or I think.

Keep Smiling,

Carole