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12-11-2009, 05:23 PM | #1 | |||
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Grand Magnate
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DD tells me her down mattress topper would be terrible for me when I tried to turn.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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12-19-2009, 10:05 AM | #2 | ||
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12-19-2009, 10:36 AM | #3 | |||
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Grand Magnate
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Quote:
I'll try that!!!
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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12-20-2009, 10:53 PM | #4 | |||
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Senior Member
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Quote:
It also helps to use a good mattress pad. Worth a try and besides, a good mattress pad is worth the extra money. After all, it is something used EVERY night. And Kicker, even you are worth it. |
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01-14-2010, 11:51 PM | #5 | |||
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Magnate
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Question for the PPMSers. How much did you go through before the official PPMS dx?
I ask, as I am stuck in limbo land. sx started in aug of 2007... been in continual "flare" since with a 3 month reprieve, where the majority of sx (but not all) went away. MRI proved that copaxone actually made it worse. Horrible reactions to Avonex, now have 3 TY infusions under my belt. 14 MRIs since oct of 07 and every single one of them has progressing/ new lesions. Doc says I am no longer considered to have a remitting form of MS. And it is progressing faster than she has ever seen... yada yada... BUT, she will not give me an official PPMS dx, nor an SPMS dx.... so I feel stuck somewhere in the land of the lost here. I get that a PPMS dx would pretty much kill any hopes with my insurance co, but not knowing is just as annoying. SO my question is, when do they call it??
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. I am not spoiled! |
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01-15-2010, 12:57 PM | #6 | |||
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In Remembrance
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Wow, Legzz, I'm so sorry you seem to be heading that way. Your Doc already gave you the hint, when he said that you weren't RR anymore.
Your Doc probably is holding back on the PP DX, so you can still fill yer gut with TY or some other DMD. JMO, but I think you're wasting time and money on MS Meds, that are only for RR (especially Tysabri) ((((((((Legzz))))))))
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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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01-19-2010, 12:47 AM | #7 | |||
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Senior Member
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This discussion of mattresses has been really helpful. I had thought of trying a Temperpedic, but after learning that it's difficult to get out of and turn over, plus the heat issue, I'll save some money and maybe try a topper with a good mattress pad instead. Like you Kicker, I have a hard mattress that I used to love, but now it kills my back and other pressure points. And yes, I have trouble getting in and out with nobody around to help. That's why I sleep in my lift-recliner.
The problem with the lift type recliner is that it has a pretty hard seat. Suppose with all the "workings" inside, there isn't as much room for padding as in others. leggz: I'm sorry your flare hasn't let up. As Sally said, your doctor probably has his opinion, but hates to label you just yet for insurance purposes. Hang in there! A new question for anyone who knows!!! Being I have the incontinence problem now -- don't realize I have to "go" until it's too late -- I have resorted to the latest in underwear fashion, Depend. However, I easily develop sores on the tops of my legs where the elastic goes. The main problem is when sleeping, sooooo.......has anyone heard of or had any experience with an implanted urinary catheter? Besides my legs not working at all anymore, this problem really keeps me housebound. Just trying to find something that will allow me to be "out and about" a little. Mrs. D -- Love your avatar! My ex and I lived in Oswego, NY for a year when first married and we sure saw alot of that white stuff .... 103" in three days!!
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_____________________________________________ .....Judy SPMS -- FIBROMYALGIA -- Ouch! and Ouch! . |
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"Thanks for this!" says: | SallyC (01-19-2010) |
01-19-2010, 11:56 AM | #8 | |||
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Grand Magnate
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IF your incontinence is isn't terrible, I like Poise pads. They go in regular underwear with an adhesive strip like a menstrual pad, if self toileting, change without having to remove underwear, come in variety of sizes and may be cheaper. Not sure at night because of laying down, you may have leaks and will need Depends. There's others stuff out there like Poise too.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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"Thanks for this!" says: | SallyC (01-19-2010) |
03-03-2016, 09:12 AM | #9 | |||
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In Remembrance
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http://acceleratedcure.org/sites/def...3.1.16.pdf.pdf
Sounds promising for PPMS. Dozen' t mention SPMS...darn it!
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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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03-09-2016, 10:32 AM | #10 | |||
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Grand Magnate
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Sally, do you know what you did? A little ray of light shone in my MS life. I see my neurologist in May, we will discuss Ozcrelizumab ( I know I misspelled)
A little hope. I know what is is done already done but maybe this will help in not progressing furture. I just need something to halt this $%^ age progression thing!!!
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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"Thanks for this!" says: | SallyC (03-10-2016) |
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