Connect with others who understand.

sign up log in
Resources
About MyMSTeam

Connect with others who understand.

sign up log in
Resources
About MyMSTeam
Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

For Those Of You Who Have Never Had A Period Of Remission With Your Ms Since The Onset (progressive MS) Have U Found A Treatment That Works

For Those Of You Who Have Never Had A Period Of Remission With Your Ms Since The Onset (progressive MS) Have U Found A Treatment That Works

I’ve has ms for 16 years now and was originally diagnosed with RRMS but I’ve never had a period of time in all 16 years where I didn’t have all my symptoms. I have lesions in both my brain and spine. Since I’ve never been symptom free or even close to that, my neuro has come to the conclusion that I must have progressive ms. There’s only one dmd that I know of that has been FDA approved for PPMS and that’s Ocrevus. I tried it and it made me very sick for about 9 months. I never do well on any… read more

posted over 3 years ago
A MyMSTeam Member said:

I am 2ndPro since i told my neurologist that my symptoms never totally went away. 8 to 10 years ago. Been on quite a few and now Tech Fidera for the last few years with no worsening and tolerable side effects. Good luck

posted over 3 years ago
A MyMSTeam Member said:

Hi, I know just how you feel I've had this damn disease for 18 years now, but the neurologist just tells me that it's secondary progressive, but like you I'm never free of symptoms. At the moment the worst one is trouble with my bladder. I go into hospital about every 6-8 wks for Botox. It does help for a while but I can't remember when I wore a normal pair of knickers I'm permanently wearing pads, I hate it, makes you feel so much less of a woman, do you have any problems in that area.

Regards

Terri Lucas

posted over 3 years ago
A MyMSTeam Member said:

@A MyMSTeam Member please excuse me, I'm kind of slow on most things MS. I too was diagnosed with RRMS and could see instances where I ignored symptoms which quickly went away only to resurface again in the future but once I was diagnosed, I noticed that my feet had been tingling for some time. I have never understood determining what type of MS we have been blessed with. All I can say on DMDs is we must keep trying new ones until we find the one that works for us and I'm still stuck on your neuro changing your MS diagnosis or just changing the type of MS you have. You're right, it makes a big difference in medication availability. Since I can't tell you when the tingling in my feet started, not sure I can be much help but would say we are very similar in our symptoms. All I can say is a second opinion makes long term sense to confirm what type of MS you have

posted over 3 years ago
A MyMSTeam Member said:

I have not had a break at all since my dx an it was changed from RRMS to PPMS in 2 years. That infusion made me sick also I only had the first dose and will not do that again. I was suppose to have it yesterday and the drug company was MAD or the lady on the phone was when i told her no thank you. Currently I havent found anything that helps I do go back to my nuro dr Feb 22nd and hopefully he can provide some information. I did just also get dx also with fibromyalgia last Wednesday and now am starting transitional care. Hope things get better

posted over 3 years ago
Already a Member? Log in