secondary progressive?

Home Forums 20s and 30s + secondary progressive?

This topic contains 8 replies, has 3 voices, and was last updated by  Footsteps 7 years, 5 months ago.

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • November 10, 2011 at 11:09 am #6456

    Footsteps
    Participant

    Hi!

    I’m relatively new on here. Just been on a couple of weeks but I love how supportive and understanding people are. I’ve been diagnosed and treated for MS for 9 years, but my first symptoms and positive MRI were 15 years ago when I was 12. I’ve been on Avonex and have done so well. I made it through college and university and now am living and teaching in Kuwait and travelling the world. I usually have 1 relapse a year but since February I pretty well have been constantly out of remission. I had a bit of a recovery period over the summer but since late August I continue to get worse and have had 3 distinct sets of symptoms but no true or complete recovery. I keep in touch with my doctor in Canada and she wants to see me as soon as possible to “switch my medications”. She hasn’t said anything conclusive yet but I’m fairly certain that she’s thinking I have secondary progressive MS. Is anyone else going through this? or something similar? It’s scary because I’m not getting great health care here and probably won’t have access to any newer medications so this means some big life and faith decisions. I’m looking at maybe having to come home permanently and I’m not sure I have the strength or energy at the moment to look for jobs in the Canadian school system or fight my way into the school boards. I’m not even sure how much longer I can keep up the pace of teaching. Sorry for seeming so down. It’s just scary at times. Well I am off for an MRI. I guess we will just see what it says and try to make one decision at a time!

    November 12, 2011 at 2:26 pm #6863

    Lelainia
    Participant

    Hi Andrea!

    So sorry you have been so sick! Ot must be very scary, especially when you are away from home.

    Here’s what I know about our disease modifying drugs, as explained to me by my MS specialist:

    Avonex is the lightweight of our drugs. It’s the one that you take the least often and they usually use it if you have not had alot of symptoms and relapses. Betaseron and Rebif are middle of the road. Copaxone is the heavyweight. It’s a daily drug.

    It’s not unusal to have to switch drugs over time, if you are having alot of relapses. Just like with any other drug out there, the docs need to find a good fit. The goal of a DMD (disease modifying drug) is to reduce the number of relapses, the length of them and their severity. If you are having numerous relapses on Avonex, then it might be time to try something stronger.

    I wouldn’t ring the secondary progressive alarm bell just yet-the frequency of your relapses may just be due to Avonex not being a strong enough drug anymore. You may find that switching to something stronger puts you back into remission. (Which I really hope happens for you!)

    Hang in there! I will be thinking of you and holding good thoughts that a switch does the trick. Let us know how you’re doing.

    November 12, 2011 at 3:55 pm #6864

    Footsteps
    Participant

    Hi Lelainia!

    Thank you for your positive comments and words of encouragement.

    Unfortunately I think that was what she was suggesting. The doctors here have been saying it for awhile. I was just choosing to ignore them and hope they were wrong.

    I’ve already been on the Befaseron and had the increased liver enzymes on it :( My doctor wants me on Tysabri which is one of the drugs they use once your other options have run out.

    She’s been great about e-mailing back and forth and offering any support she can. and she was kind enough to squeeze me in the week before Christmas. So I’ll be flying home and will see what I can sort out then.

    thanks again for your support

    Andrea

    November 15, 2011 at 4:45 am #6865

    Lelainia
    Participant

    Oh Andrea, how stressful! I am sorry to hear that. I’ve been sitting on the borderline of RRMS and SPMS for some time now and have done lots of treatments, though never tysabri. I hope that your doc can find you a workable solution. The employment thing is crazy-having to worry about that while being so sick is not fair. Have a safe flight home. I hope there will be good news waiting here for you.

    November 18, 2011 at 11:08 am #6866

    Footsteps
    Participant

    Thanks Lelainia! Right now it’s just a matter of taking one day at a time, and hoping and praying for a good report in a month. Right now I’m just doing as much as I can (at work and stuff) but resting as much as I can too! We have to teach our kids about character traits (learner profile traits) the one I am focusing on now is being balanced person and a balanced student. I definately need to work on it!

    I’m sorry to hear that you aren’t doing great either. From your other posts you have been having trouble getting back into remission correct? Best of luck to you

    Andrea

    November 18, 2011 at 2:27 pm #6867

    Lelainia
    Participant

    Hi Andrea,

    It’s true, for the last 4 years, I’ve been in a pattern of getting worse-no remission despite numerous treatments, including chemo. I sit somewhere between RRMS and SPMS. At this point, I’ve decided that there’s probably not much I can do-my immune system is going to do what it’s going to do. The only thing I have any control over is how I choose to cope with it. I’ve always been someone who tends towards thriving in the face of hardship and challenges. Physically, I may be struggling, but mentally, I am FIERCE!

    I think adversity challenges us to tranform our notions of what we are capable of. I bet you’ve already discovered you’re alot stronger and courageous than you ever imagined you were. If I can give you any words of encouragement, it would be to keep moving forward. Keep living your life and chasing your dreams. DO the stuff that really matters. This is the fuel that will keep you going, no matter what happens.

    May 24, 2012 at 5:42 pm #6868

    Ahmed
    Participant

    Andrea – I hope all is well on your end. I have a question that I’m hoping you can assist me with. Where did you get your Avonex from in Kuwait? Thanks! Ahmed

    May 25, 2012 at 5:31 am #6869

    Footsteps
    Participant

    Hi Ahmed!

    Through government hospitals. I could never find it privately (although a few years ago I was on Betaseron and I got that privately, and covered by insurance). I have only been able to get it at IBN Sina.

    Good luck

    Andrea

    May 25, 2012 at 6:30 am #6870

    Footsteps
    Participant

    are you in Kuwait, or thinking of coming? Best of luck!

Viewing 9 posts - 1 through 9 (of 9 total)

You must be logged in to reply to this topic.