Givers Who Have Multiple Sclerosis

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Comment by Lori Spector on Sunday

Well, I hope you find exactly what you need.  Thanks for the info.

Comment by 911dispatcher on Saturday

Lori~ Amrix is a 24hr muscle relaxer.  You take it at night before you go to bed and it lasts 24 hrs.  I've never seen a physiatrist before just my neuro & now this new Dr.  They added Valium for me to take at night & I've taken it for 2 nights now.  It's 5mg but it's really making it hard for me to get up.  I've been off these last 2 days so I've been able to sleep in and so I'll see how I do in the morning when I have to get ready for work.  It has helped my legs because they are not as tight and I've haven't woke up in pain at night, so that has been nice.  The PA was talking about the possibility of a Baclofen pump in addition to the Amrix.  She also talked about upping the Amrix.  The Valium is nice to be able to sleep but I don't think it's the right answer.  It's fantastic to sleep comfortably at night but it doesn't help my situation during the day when I'm awake.  Right now my legs are so spastic and they are hurting good.  She did tell me that not to worry that they could help me and they were going to make sure to help my legs were I would not be dealing with this like I have been.  I told her this was my first symptom and after 10 yrs it's still by far my worst symptom.  She smiled and said we can help you so you will be better soon.  For once I'm actually excited about it all.  I get so sick of meds and being poked, prodded, scanned, tazed and any other thing they can throw at you with MS.  All the other meds I take for various symptoms help I just want what I've always wanted since this started...my legs to quit hurting for once.  You might look up the Amrix.  It might be something to help you.  I like really well. 

Comment by Lori Spector on Saturday

Hi 911 Dispatcher...I was wondering if who you saw was a physiatrist.  They are doctors who do rehab medicine.  I have been seeing one who is a big spacticity guru.  I had botox injections in my legs several months ago and unfortunately it did not help. (it actually caused alot of cramping)butam doing it again next month with my fingers crossed.  He said he is surprised that I can still actually get around my legs are so spastic.  I was on Baclofen for years but went off it because it reallt didn't make a difference.  I have never heard of Amrix...did it help you?  Hope you are doing ok. Thanks! :)

Comment by 911dispatcher on Saturday

Just wanted to let you all know but my new neuro just referred me to a doctor who specializes in treating spasiticity.  I've never heard of a doctor like this before he's a physical and rehabilitative specialist but it's not like a sports medicine Dr.  It seems he's on a total different playing field.  From what I gathered at my first appt 90% of his patients have spasiticity like with MS, CP & other disorders that cause it.  I go back next month and my plan is to find out if there are other doctors out there like him so I can see if I can figure out how to locate them for everyone else so they might be able to get the same help that I'm starting to get.  I'm on the max dose of Baclofen plus the Amrix and the PA was not happy that I was on all of that & my legs were still in such bad shape.  They are going to be able to work with me on different medications to help my legs.  If I find more of these doctors my plan is to share it here with ya'll and some of the other MS sites.

Comment by Caroline on Saturday

Let's welcome Ann to the group!

Comment by Caroline on Saturday

I am hosting a fundraiser in Boston... I know you are all over the map, but if you know of anyone in the Boston area, please tell them about my event. My fundraiser is at California Pizza Kitchen for Team Kaliope's participation in Boston's Walk MS. I was diagnosed with MS in 2006 and need your help making this event a success! Visit CPK at the Prudential Center in Boston anytime on Feb. 27th. You must bring a printed copy of the flyer with you as a portion of your bill will be donated to Team Kaliope! Please share with your friends! Thank you!

Comment by Caroline on February 5, 2012 at 8:56am

How is everyone doing? We've had a mostly mild winter here in the Boston area. Very thankful there hasn't been much snow since I am a new driver!  :)  Today seems very cold out however, so I am getting prepared to wear layers. The very cold weather really seems to bother some symptoms when I am outside. Hope I can beat MS this time!

Comment by 911dispatcher on January 10, 2012 at 6:29pm

I agree Karen.  The heat zaps my energy and I could sleep but cold or weather changes causes great problems with my spasiticity and that in turn causes me more pain.  It also seems to affect my sleep too.  I would love it in the mid 70's to low 80's! 

Comment by Karen Dady on January 10, 2012 at 4:22pm

Cold has always affected me worse than what the heat seems to. I feel like I walk like Frankenstein during the cold months because of stiffness. Wouldn't it be nice if the weather could stay in the 70's or 80's with no humidity or cold?

Comment by Caroline on January 7, 2012 at 8:25am

How is everyone doing? Do you all find the cold weather affects your symptoms?

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