Comments on: I Have Two Big Decisions To Make About My MS

By: Shannon sullivsn

Shannon sullivsn — Fri, 27 Jul 2018 01:28:05 +0000

Hi Susan,

Thank you for sharing. Also thank you to Cathy who is a brave warrior.
🙂

I am deciding to go on Aubagio.
Is there any long term negative side effects for us the patients?

By: shifrachester@gmail.com

shifrachester@gmail.com — Fri, 15 Jun 2018 08:41:59 +0000

Retire at 59? I think not! No reason to, and financially unable to as well. To rest is to rust!

Thank you for your advice and thoughts. I appreciate it. I am still trying to make the decision. This one is really not easy.

By: Sarbjot Dulai @ Neurology Associates

Sarbjot Dulai @ Neurology Associates — Wed, 06 Jun 2018 09:37:59 +0000

Being in such a quandary, especially when it comes to your health, is never easy. At 59, you should actually be readying for retirement, away from the big decisions. I hope you finally find the relief you need. MS could really take its toll and put you in a situation where you need to pick the lesser evil. That third option recommended by your neurologist sounds good, though.

By: Shelley

Shelley — Sat, 26 May 2018 19:51:47 +0000

You’re in my prayers

By: Shelley

Shelley — Sat, 26 May 2018 19:47:51 +0000

I’m in the same boat with not resorting (yet) to medication. My main treatment is autoimmune Paleo (aip) diet which nearly cured me of restless legs and sleepless nights from leg cramps and in over a year they’ve never come Back. I have to believe it’a Doing other good things I don’t recognize, behind the scenes

By: Suzanne Sparks

Suzanne Sparks — Fri, 04 May 2018 16:40:27 +0000

Hi Cathy,

Like you, I was on Copaxone injections. I’m on Ocrevus infusions now. Overall, I’m pleased with the results. First 2 infusions are half doses 2 weeks apart. Then once every 6 months. I started in June of 2017. Of course, we’re all different but the benefits I’ve seen so far are less fatigue & less vertigo. Hoping & praying a cure will be found!

Best wishes,

Suzanne Sparks

By: shifrachester@gmail.com

shifrachester@gmail.com — Fri, 04 May 2018 11:42:33 +0000

Thank you, Amanda. I sincerely appreciate you taking the time to share your experience with Gilenya. It's very helpful to me while still making this difficult decision. I hope you continue to do well!

Thanks for reaching out and all the best~
Cathy

By: Amanda

Amanda — Fri, 04 May 2018 09:07:42 +0000

It's a tough decision and I can't mae a recommendation, but I can share my experience with Gilenya. I have been taking it for over a year now and am fortunate enough to have been approved for their financial assistance so that whatever is left after my insurance coverage is paid for. I haven't had any new lesions form since starting it (woohoo!). I will say that I had a bout of shingles around 6 months ago which was no fun at all & my neurologist said that's common with Gilenya. If I have shingles once more within the span of a year, she's changing my medication. That's the only issue I've had so far - no side effects to deal with, no true relapses, no problems. I hope that whichever treatment method you choose works great for you! Sending hugs!!!

By: shifrachester@gmail.com

shifrachester@gmail.com — Tue, 20 Mar 2018 14:10:41 +0000

Thanks, Jo. Your comment means a lot and I appreciate you sharing it here. Very sweet of you.

Gary had a good chuckle when he read the part about preparing healthy meals for me. Two veggies (at least!) with every meal. You know him so well!!!

Thanks so much. I left you a text too but also wanted to reply here.

Love to you~
Cath

By: Jody New

Jody New — Mon, 19 Mar 2018 09:12:37 +0000

Cathy, I sincerely admire your courage to share and research a better way to deal with this horrific disease. I am encouraged by the results some have shared, and hope that there is a glimpse of hope for you in one of their treatment options.

I know life has not been easy for you, but your spirit as others have mentioned, it quite amazing and uplifting for the rest of us. Of course, having Gary to prepare healthy meals for you and ensuring that you get to your appointments, and always making sure you eat your vegetables must help, too!

Please know that we love you, and are here to support you in any way we can. Love, Jo

By: Lois Alter Mark

Lois Alter Mark — Sat, 17 Mar 2018 23:35:26 +0000

Oh, Cathy, I'm so sorry that you're struggling and hope you kick this disease's ass. You know I'm rooting for you - always - and am sending you virtual hugs until I can give you a gigantic one in person. Love you, my friend.

By: janet tancredi

janet tancredi — Thu, 15 Mar 2018 17:12:53 +0000

Cathy, hello from one who shares in the dilemmas of MS. You truly are blessed with so many that rally around you! There is nothing else that I would choose to say that has not all ready been said. I too, can share with you all that I have tried. Due to the uniqueness of our special disease, everything works differently on most. I know that is not very helpful, however, ultimately you are the one that has to make your decision on what you are going to do.It is important for you to hear the advice of professionals. My brother once said to me, " just remember they are not G-ds. Just practioners of medicine. I know, easier said than done, try to be strong. I wish you all the best. Baby steps! It sounds like you have two incredible people in your corner!