[SallyC]

Hi KL. Yes Lord how those Neuros push TY..

Well, I stopped having regular flares and just like you, no longer fully recovered anymore.

I don't want to tell you what to do, but if you are still having exacerbations often...2 or more per year, then maybe, you should try TY to see if it helps you. You could be one of the lucky ones . If not, say after 4/6 mos, there is no improvement or ur worse, drop it and run like the exercise bunny.

Have you tried other DMDs?

[KittyLady]

Originally Posted by SallyC

Hi KL. Yes Lord how those Neuros push TY..

Well, I stopped having regular flares and just like you, no longer fully recovered anymore.

I don't want to tell you what to do, but if you are still having exacerbations often...2 or more per year, then maybe, you should try TY to see if it helps you. You could be one of the lucky ones . If not, say after 4/6 mos, there is no improvement or ur worse, drop it and run like the exercise bunny.

Have you tried other DMDs?

I was on betaseron for 9 months, 10yrs ago. Had horrible reactions to it so I dropped it. Got scared off of dmd's til this past Oct and Dec when I had 2 really bad flares. 4 rounds of steroids later, and neuro said its time for a dmd. So he said the only ones I could try since beta caused me so many problems, was ty, gilenya and copaxone. I went for the least risky, copaxone. This is the last one I'll try for now until further studies or whatever are done on the BG12 and that new one I think is call Auggubie, or something like that. From my understanding the BG12 is just as risky as gilenya, so Im pretty much crossing that off my list of hopefuls. Ive wanted to try LDN, but I have a "contract" with copaxone that I have to be on it for one full year unless I develope an allergy to it. Im 7 months in, so not much longer. Doc is really pushing ty and omg, you should see all those MS patients in the infusion room. ALL but me were there for TY! Im sorry, but the chance of a deadly brain infection is enough for me to say NEVER. I have the worst luck with things. If the package says may cause drowsiness, guaranteed I will be out cold. One neuro put me on .5 valium for my spasms, knocked me cold for no less than 8 hours. Did nothing for the spasms! One med said may cause stomach cramps, well, guess who got 'em. Another said may cause migraines, well, same old story. I actually landed in the hospital because of a med side effect. Ive learned the hard way to take side effects seriously. If I have "graduated" to SP, then maybe I can stop all the shots and just do symptom management.

[Kitty]

http://www.marketwatch.com/story/med...sis-2013-07-18

[Catch]

Only needed treatment for flares for the three years between my dx and now. I haven't had a flare in over 5 years, but my symptoms stay and have gradually worsened. In looking back I realize I had MS since my teen years and am 52 now so my doc says I'm SPMS.

So far I'm doing all right. My biggest problem is the destruction of my memory which caused me to leave my job in 2011. Without the stress of working, I'm a lot better, but my secretarial skills are badly compromised. I've tried to go back to work in the Administrative field, but three agencies have dropped me after I failed miserably in the skills tests.

Now I am trying to find some sort of work I can do, and still make a decent living; i.e., not working at McDonald's or Starbucks. I've actually applied for cashiering, server, and even baker's helpers, but never made it to the interview stage. I'm wondering, have any of you found a second career after MS caused a severe impediment to doing your usual work? I am at a loss as to how I can use my remaining knowledge to make a living. SSDI denied me benefits and I don't have the money to start a business.

Appreciate any thoughts on the matter. Thanks.

[Kitty]

Catch, I'm assuming you're still mobile and have limited trouble getting around? I think I might be SPMS, too, but haven't heard it from the Neuro. I'm 52 too and have had symptoms since my 20's.....although compared to now they were very mild years ago. I had to leave my job in 2008 due to my worsening mobility and vision problems. Now, I couldn't work if my life depended on it. I was approved for SSDI but I understand how hard it would be if I hadn't been approved.

Have you investigated anything like transcription that you could do at home? I wish you luck in your search for employment.

[kicker]

I always feel like I'm waiting for the other shoe to drop, a nameless anxiety of waiting. At 46 was DXed with MS. Did Rebif 2 years and nothing, good or bad. Neurologist and I agreed, it seemed like classic PPMS, have never RRed. We also agree no more MRIs. First couple of years, didn't seem so bad, just had to pee alot. Then I started wall-walking and falling. From Canadian crutches to walker, 4 years ago went into chair. Some sleepless nights, stabbing pain, throbbing shoulder pain. But although still in a chair, can self-toilet, am tired in afternoon but don't nap. Still can't walk, memory seems fine although I am 57, no pain. Short term memory varies - is it age, lack of interest or MS?

But I can't relax, expect MS to take another punch at me. Don't dare to hope (in case MS is listening) I'm in a plateau. I'm totally confused.

[SallyC]

Even though I am SPMS, and much older, I think we are on
that same damned plateau. I hear you Kicker.

[Erika]

I'm also SPMS...but I sure wish for the plateau.

The roller coaster ride I'm on is exhausting and there is no plateau in sight. At every turn, something else appears.

Stop the rides in this crazy MS fair ground...we all want to get off...even those who are on the farris wheel

With love, Erika

[JoanB]

This sure has been a quiet thread for quite some time.

I've searched for and read threads that have any mention of Tecfidera, but it looks like nobody has talked about it in this particular thread. I know that most meds don't help with PPMS, but my doctor has suggested that I try Tecfidera anyway. What I'm wondering is: do we have evidence that it doesn't help PPMS, or do we just not have evidence that it does?

I also have an opportunity to get into the next phase of the MN-166 trial. Anybody care to share your opinion on whether or not this trial might be a good thing to try?

Last question: is there any indication that Ampyra has any effect on people with PPMS?

[kicker]

I did Amypra (also once known as Fampridine or as I affectionately called it Bird Poison). Obviously it did not do anything for this PPMS person. But, as someone once said, if you've seen one case of MS you've seen one case. With MS you never know what will happen or help.