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  • teztaylor

    Been diagnosed 4 years back been on rebif and lyrica but my body could not cope. So since last 2years been off all meds anybody else doing the same I would resly love to hear from you.

  • emily78

    I had been on Tecfidera and Tysabri but my body could not cope with the side effects from them either.  I really wanted to try to treat my MS without medication if possible. I even changed my diet as my doctor had recommended.  I went without any treatment and although I felt much better than I did on the medication, I found out I had many new leisons.  I felt like we were playing the "throw meds at it until we figure out what works" game, but in the long run, it was worth it.  I'm on Gilenya now and as scared as I was to start it, I'm so glad I did.  It has worked wonderfully for me and the side effects are nothing like they were with the other medication. 

    I hope that regardless if you stay off meds or go on them that all goes well for you!


  • DeboLyn

    Hello tez,

    I was diagnosed in 2012 with PPMS @ age 50. Tysabri infusions was my first medication, although my body coped well it didn't do the job for me. I was on it for 1 year, liasions continued to damage my spine. I now take chemo treatments. That has worked, it absoultly sucks, but it has stopped further progression. You know your body, how do you feel? Can you tell that things might be different? I am only replying because I know that once you lose something from this MS you can't get it back. Don't take a risk of losing things your body can do today. This is risky and I hope you do  what is best for yourself. Deb


  • looneybiz

    I have PPMS and there is really nothing I can take that has been clinically proven to really help slow down the progression. I don't get terrible relapses though, I am just decling at a steady pace without any remissions. My nuerologist said that he would prescribe me something if he thinks it would help my mindset, but he said that since nothing has been proven to work that I'd be dealing with side effects for perhaps no reason.

    Sometimes not having any treatments other than helping with some of the symptoms is stressful and discouraging. I have come to terms that I will probably be in a wheelchair soon to get around outside my house. If I go anywhere that involves a lot of walking, I need one right now. It is what it is. We all have our battles in life, and this is one of mine. Thats how I view it anyway. Important thing is to not let despair rob you of joy and ALWAYS keep your sense of humor.

  • pollyhelms

    I am allergic to all classes of MS meds. Would love to be on a DMD, but cannot be done right now. Sense of humor is the best medicine for npw. Glad I have a great support system at home. Without that, life would be harder.


  • tallgal
    I was diagnosed 4 years ago as well. I initially was taking daily copaxone(sp?) injections, but didn't tolerate them well at all. (I had terrible panic attacks about two hours after injection.) I felt that the gamble of what might happen to me in the future wasn't worth the price of feeling like a nut case everyday. I've been afraid to try new medication because of my past experience. (Everything sounds scary!) I have been managing my MS with diet, exercise, (some days...) medical Marijuana and low dose Naltraxone. I haven't had any new lesions or any activity in over a year. I am not sure if the way I am managing my MS is a good way or not, but so far it is working okay for me. Not being on conventional treatment is a little scary, but MS is scary anyways. I hope that however you manage, your journey with the MS monkey on your back that it goes well for you!
  • nursep

    been off meds 2 years with less relapses and less activity on MRI. Go figure!