New Here

Glad to know about this forum -- finally! Diagnosed with MS in 1995, I'm currently on my third disease modifying treatment. Grateful for every day!

[falalalala]

Welcome!

[greaterexp]

You found us! I'm sorry you have MS, but it looks like you have a marvelous attitude. We love sharing with one another about our MS, sharing encouragement and laughs, and more. This is a group who understands. Here's the link for MSAA, which is really a helpful site:

mymsaa.org/

[Juliew19673]

Hi! Glad you found us, we are a very nice group - enjoy!

[BigMar7]

Welcome Woodswalker, I have been on this site for almost 3 years and it is the best site I have found. You learn a lot and have fun with people who become your friends. I was diagnosed in 2005, was on Copaxone for 12 years and now don’t take any disease modifying treatment. 😀🌺

[Hidden in reply to BigMar7]

Wow! I was on Copaxone for about thirteen years before having a major relapse. After a geographical move and change of neurologist, I have had two DMT changes. I rejoice for you, that you are well enough to be medication free!

[carolek572 CommunityAmbassador]

Welcome Hidden to this forum. I found this forum last March and I wish that I had found it sooner! Again, welcome and I look forward to learning more about you.

[rjoneslaw]

welcome

[pamgarner]

welcome,we are a fun group,we are full of ideas to help each other and we would love to hear from you of what works for you and doesn't.and I think this group is encouraging,they help me along,

[IFwczs]

Welcome! If you haven't read Ann Boroch's book "Healing Multiple Sclerosis," please do so. (I have found out about it on this forum and wish I had known about it 5 years ago, when I was first diagnosed.)

[bxrmom]

Welcome to this wonderful group Hidden Jump in anywhere or make your own post. Celebrate or vent about anything, we understand! Look forward to getting to know you.

Jessie

[mm1527mm]

Hello, i am also new what 3 dmt have you been on and for how long? Any side effects? Trying to decide which dmt to try

[JTZES in reply to mm1527mm]

Welcome to the group as well. Are you newly diagnosed? I've been on most DMT'S. If you don't like needles Tecfidera seemed to be working from the DMT standpoint but really messed with with my stomach which doesn't happen with everyone. Gylenia is also is in pill form no side effects but didn't work for me.

If you can deal with needles I would recommend Avonex. A once a week shot that worked the best for me I was on it for 2 plus years and only had a few exacerbations. Side effects were flu like symptoms the following day.

I came down with cancer and was taken off all DMT'S for a year and a half. When I started back up they put me on Ocrevus which is not working so I'm going to ask to go back on Avonex when I see my neurologist the next time.

Hope that helps some and again welcome to the group.

[mm1527mm in reply to JTZES]

Thanks so much for your insight. I am cis. this july i got numbness right lip face cheek after five drs and two hospitals mri showed many lesions. I did visual evoked test normal spinal tap no bands but immflamation spine and neck fine. Went for two opinions so far first said ocrevus or second tecfidera he believed treat more aggressive second dr do nothing or copoxone or tecfidera. I am jcv positive. Any info on pdl with tec or ocrevus? Also scared about cancer side effect with ocrevus and its newness though i have heard great things i am young 28 never any health issues two young kids 1 and 2 this was very traumatic for me and my concern was being around for my kids and doing what i have to do to do that

[JTZES in reply to mm1527mm]

Other than being a 6 hour process Ocrevus is a good drug. Even though it is a modified form of chemotherapy it won't increase your chances of getting cancer. I am also JVC positive and Ocrevus has never had an reported case of PML. More or less most DMT'S have the potential of causing PML. Some more so than others. It has become harder to get Ocrevus covered by insurance. $120,000 per infusion.

Copaxone caused me seizures.

Avonex also has a low percentage of PML.

[mm1527mm in reply to JTZES]

Thank you for the info. Regarding pml cases with ms drugs does it normally happen when blood levels are not monitored or suddenly after treatment?

[Hidden in reply to JTZES]

Sorry your DMT led to cancer. I have been on Copaxone and Tecfidera, now on Ocrevus. MS has been slowly and steadily progressing, so am praying Orevus stops it, yet celebrate every day, no matter what. Best wishes to you with your switch off of Ocrevus.

[Hidden in reply to mm1527mm]

Sorry for the delay. Cognitive challenges made it difficult to find my way back here. I was on Copaxone first, for about sixteen years, then Tecfidera for two. Now I am on Ocrevus. I have had only minor side effects on any of them, although I test positive for two out of three risk factors for PML, and my neurologist was cautious about leaving me on Tedcfidera.

[JTZES]

Welcome, we are all glad you found us. It is a great group of folks from around the globe.

[anaishunter]

Welcome to the MS online gang. It's amazing how much our shared MS journey, through its pains, joy, and sometimes silliness makes us feel like we have known each other forever on this forum. It's a safe place, tell us your story (or not), the good, the bad, and the ugly.

[RoyceNewton]

g'day welcome to the family (Sister?)

Royce