Bad. News!!

[Momjules]

Hi! After my three mris I have gone to my new Nuero is read the results. They are not good.

My brain is the same-several lesions that are not causing trouble.

My neck is showing a new active lesion.

My spine is showing several new lesions in my spinal cord.

My tecfidera is no longer working about being on it since October 2016. I’m thinking it never worked due to new lesions.

Due to heart problems and diabetes, my only options are the infusion types.

Depressed and worried.

Once again I am told I’m lucky to be walking!

Also this week, after monthes of waking up with all over pain after sleeping on a 17 year old mattress, we purchased a new one.

I wake up almost painless! It’s awesome!

It’s been a up and down week so far for me!

Any info on octiva(spelling)? Would be helpful as we are thinking that’s what we will be using after my blood work.

I’m also jc positive but we are checking again.

Thank you!

[jimeka]

Momjules, what type of ms do you have? Good news about your mattress, blessings Jimeka 🦋

[Momjules]

Hello!

We are thinking it may be heading to progressive as these lesions are new and active .

Or maybe relapsing but that’s really not applying now.

I will have my blood taken and then we will make decisions about where my ms is and how to proceed.

I was diagnosed in March of 2013.

[Kenu]

Sorry for the bad news on new lesions 😞 Hope you figure out new DMT soon and can get it started to slow down progression 👍 keep us informed 🤷🏼‍♂️🙏🐾🐩 Ken

[Momjules]

Thank you for your kind thoughts!

Best of luck to you too!

[greaterexp]

I'm sorry you didn't get better news. I am glad, however, that you found out that your present DMT hasn't been effective so you can move on to something else. I pray your next DMT works much better!

[Momjules]

Thank you very much.

It’s a rough road to travel.

Ms runs in my family so I wasn’t too surprisef

[jackiesj]

MomJules, oh my....I'm thankful the bed helps the pain but sorry for the pain from Docs visit.....I too have heart disease on top of MS.I also ested pos for Jc but id o understand many do have that but live long life not knowing....the more active I can be(but never over do!)...the better....best wishes

[Momjules]

Thank you very much!

Heart attack at 45 leaving heart failure.

Then diabetes.

Then ms.

Lots of meds. We have to make sure the meds all get along together.

All my doctors say “ keep moving” so that’s what I try to do.

Some days are harder then others.

It’s nice to find people that understand.

Good luck to you!

[CalfeeChick CommunityAmbassador]

Momjules I will probably have another comment for you when I re-read your post in the morning when I am most alert.. I am so sorry for all the not good news your received. If you are JCV+ it's good that you are getting off the tecfidera, it and Tysabri can potentially lead you to an even more serious brain disease called PML. I am also JCV+ and so far have stayed away from DMT's. It's good that you are aware of all your health conditions and can take them into consideration when deciding on new medications. You mentioned the Ocrevus and there are some on here that have started the infusions and seem to be doing well. It is delivered in 2 infusions a few days apart. Then again, every 6 months after. My Neuro also says Rituxan (rituximab) is quite similar to the Ocrevus and may be helpful..

[Momjules]

Good morning!

Thank you for the information on ocrevus. I’ll be researching it this weekend.

My lesions on my spinal cord must be stopped. I don’t think the tecfidera helped me at all.

My doctor just ordered more blood work.

I just moved over the last holidays.

This is a new doctor and finding such new problems makes me wonder about my old doctor. This didn’t happen overnight.