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09-22-2012, 10:20 AM | #141 | |||
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In Remembrance
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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?
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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"Thanks for this!" says: | KittyLady (09-22-2012) |
09-22-2012, 04:21 PM | #142 | |||
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Member
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Quote:
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Dx RRMS April 1992 Yearly flares from 92 to 11 MS induced seizures 2002 Flare Oct 2011 Flare Dec 2011 Left disabled after 2 previous flares Betaseron '02, Copaxone '12, Tecfidera '13 (allergic reaction to all) No longer taking any MS therapy meds |
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"Thanks for this!" says: | SallyC (09-22-2012) |
07-19-2013, 10:15 AM | #143 | |||
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Wisest Elder Ever
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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07-19-2013, 11:28 AM | #144 | ||
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Member
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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.
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Relax--It only hurts until you die . I'm still walking upright and six feet above ground. . |
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"Thanks for this!" says: | Erika (07-19-2013) |
07-19-2013, 11:38 AM | #145 | |||
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Wisest Elder Ever
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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.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | Erika (07-19-2013) |
09-11-2013, 05:06 PM | #146 | |||
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Grand Magnate
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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.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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09-11-2013, 06:05 PM | #147 | |||
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In Remembrance
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Even though I am SPMS, and much older, I think we are on
that same damned plateau. I hear you Kicker.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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09-12-2013, 08:33 AM | #148 | ||
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Senior Member
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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 |
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12-17-2013, 07:33 PM | #149 | |||
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Member
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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? |
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12-19-2013, 10:18 AM | #150 | |||
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Grand Magnate
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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.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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