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My latest MRI...
...shows more damage. I have large spots on both sides of my brain now, which sucks..My right leg has stopped being predictable and doesn't want to lift up when I walk..Had to drive to Minneapolis for my appointment (about 60 miles up to the University), and had an awful time driving home..Had to lift my leg from the gas to the break and use body strength instead of leg strength to stop the car...My neuro put me on 'roids, 1000 mgs a day for 5 days with a taper. He said he didn't want to wait for the Ty infusion as some of this would end up being permanent..Weee..Seems this is going downhill faster suddenly. I can't walk more than a few feet without my cane. Yep..I'm whining. I'll get over it & do what I can to overcome it. Sometimes I just get tired of fighting, though. Stoopid disease..:ranting:
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Yup; it's a "stoopid" disease.
Sorry to hear your news. My most recent MRI (in July) also showed more lesions, so I switched from Betaseron to Copaxone. You mentioned Tysabri. Have the ABCR's not worked for you? ~ Faith |
sorry report was not all good!! hugsssssssss and hoping the steroids help keep some at bay, good luck when you do start TY!
hugsss and more hugsss,sarah |
Sorry about the report. Stoopid, stoopid **** disease. :hug:
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Faith, Sarah, Barb..Thanks for commiserating ;).. I've been on Rebif and Copaxone, neither of which worked for various reasons..I've been told this is PPMS, but this isn't supposed to happen with that, so I don't know what to call it anymore. Well, I do, but nice girls don't talk like that :o.. The steroids seem to be helping. I went to get the mail without the cane today and made it there and back, so things are looking up. 'Roids give me wicked bad headaches, though, so I'll be glad when the taper starts (on Tuesday)..
Hope all is well with everyone! |
I'm so sorry to read about this flare, and I do hope the 'roids give you some relief.
You mentioned brain lesions and an unco-operative leg. Did your neuro do a spinal MRI as well to check for spinal lesions, in view of your leg problems? I've only had one spinal MRI, but it shows the lesions that have caused the troubles with my legs, even the original exacerbation over 30 years ago. I'll keep you in my prayers in the hope that this eases quickly for you. Please keep us up to date as to how you're managing. :hug: |
You DROVE lifting your right leg UP..and moving it to brake????
AMAZING.. you are SUPERFLY~! Hang in there...Warmly Jan |
I had spinal lesions several years ago, but nothing new now, Anne.. Just more holes in my head apparantly :rolleyes:..
Jan, I've had to drive with my left leg before, but there just wasn't enough room in the car to make it work this time (too many passengers)..Superfly? LOL..What a picture that conjures up..Don't think I could lift all the gold chains..:D |
Maybe PRMS . . .? How long have you been dx?
Why did I think you were on LDN... :confused: So sorry for the newest results. :( Cherie |
So sorry Polar, I hope the roids work and you are feeling better soon..:hug:
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I've been dx'd for 4 years, and yes, Cherie, I'm on LDN..I've had good luck with it, but it seems to be not quite as effective as it once was..Maybe that's just temporary, too. PRMS has crossed my mind, but what a grand cosmic joke this is turning out to be..I don't think anyone knows what kind it is anymore. Not that the naming matters, but it would give me some idea of where I may be going with this..
I think the 'roids are working, Sal..I'm tooling right along. No roid rage either, much to everyone's relief..:D |
Now I'm curious (not the monkey, the emotion :))..Is it possible to go backwards with MS? I was dx'd as PPMS, just slow, steady progression, no exaserbations for years..Now, suddenly, flairs with new sx that steroids seem to help with and another new rx for Ty..What's up with this? I know I'm special (:rolleyes:), but c'mon..
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Can't answer your question, but, yup. Sounds like you're special, George. :)
~ Faith |
Hi Polar, My mom was diagnosed with PPMS. She was on a slow steady decline. Then she had serious problems walking when one of her legs stopped working about 2 months ago. The neuro gave her steroids and lo and behold she started getting better. The neuro now thinks that my mom has PRMS since she reacted to the steroids. She told my mother that she could go on Cellcept or get IVSM every 3 months for a year (I think?). Sounds like her situation is similar to yours--the PPMS getting re-diagnosed as PRMS. Good luck with the Tysbari and come see us on the Ty. board and join the crew! :) I'm about to get #8. After 6 months on it there was no change on my MRI. I hope you have the same luck.
Anyhow, start feeling better soon. :hug: :hug: :hug: |
Thanks, Natalie..I'm keeping my fingers crossed (they still do that!)..It's just nice to know I'm not completely crazy yet (maybe just a little :winky:)..Hope the IVSM works for your mom. The steroids seem to help me..What a weird bloomin' disease this is..
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sorry you're going thru this bad time.
i hope the meds help you con't to improve. have you considered hand controls for your car? i don't know anything about it other than it can be done. but $$$$$? i hope you're feeling better soon. and you must be good because i can't walk without my cane at all. |
Thanks Judy...I've been trying to put it in perspective today. Steroids make me feel especially crummy the 4th & 5th days, the taper starts tomorrow so things will improve..They are doing what they are supposed to do, the rest is probably just some cosmic payback for a high school prank or something..It won't last. I'm grateful that I was able to go thru the entire day at work without using my cane..Gave me a sense of accomplishment (yup..doesn't take much)..:hug:
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