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  • How's your MS today?

    19 posts, 6 voices, 894 views, started Oct 8, 2008

    Posted on Wednesday, October 8, 2008 by Pjohns

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    • Amethyst
      Offline

      That is a loaded question for anyone with MS.  Each day can be different—- heck it can range from the morning to the afternoon.  It all depends on the day.  What helps you?  For me - water aerobics, walking and yoga are my main exercise.  I have found that exercise (even on days where it is really difficult moving) is very vital!  Also - I have adopted (at least REALLY tried) to adopt a clean diet.  That is eating mainly poulty (very little red meat), vegetables, and fruit.  Staying away from processed foods - including the fast food joints.  It has helped me tremendously.  Plus - I have lost over 70 lbs in the last couple of years.  What is or is not working for you???



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        • 0 votes vote up vote up

          Slee1960 wrote Oct 20, 2008
        • My best friend has MS. I need some hints and tips on what to do for her. She works full time as a speech pathologist in our local school district. She has four boys, two of which are still at home (ages 16 and 12). She complains of “tingles” as she calls it running from her bra line on down to her feet. Her feet are the worst part of her MS. They are cold all the time. I should know. I’ve given her many foot rubs trying to ease her pain and get her feet warm at the same time. I know she takes injections daily and keeps a journal of how she feels daily. She is a great wife and mother. She just hurts all the time. As her friend, what can I do?? Prayers are accepted.



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        • 0 votes vote up vote up

          Mztracy wrote Oct 23, 2008
        • Hello ladies.
          I have MS: Secondary Progressive. DX 1997, but the docs think it started in the 80’s. I did avonex for 8 years, then rebif for 3 mos...hated it! lol Now I just take meds for sxs. For me, there was no proof that the shots help progressive, so the side effects were not worth it.
          I am 90% wheel-chariot. Can walk approx 20 feet with my walker, then poof...left legs goes. ;)
          I use a motorized pedaler 5 times a week for my legs and lift small weights for my arms. It does seem to help with fatigue and such.
          I do a paleolithic diet, kind of similiar to the MS diet. I lost 20 lbs and am still losing. YAY! It is hard to get used to, but I can say it does work and it is healthy. Anything else, feel free to ask me.

          Day to day I never know how I am going to feel, but that is the name of the MS game.

          Slee1960, you are doing awesome for your friend. Just being there is more helpful than you know!!
          Blessings!



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          Slee1960 wrote Oct 23, 2008
        • Hi Tracy..

          Thanks for your kind words of encouragement. I appreciate all the information you and Pam have given me about MS. I want to be able to do more for my friend, but I do feel at a loss sometimes. Anything you girls can share will be most appreciated.

          Thanks for the prayers, too.



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        • 0 votes vote up vote up

          Jomi wrote Nov 17, 2008
        • !http://images.fabulously40.com/uploadedimage/2497/thumbx120/hpim0690.jpg!I was dx’d in 1998.  I have to say that fatigue is my worst enemy. I laugh when I fall in public, esp. in front of my kids...trying to make it less embarrassing for them. Right now I am dealing with paralyzed intestines...not so fun.  I spent weeks being tossed between my PCP and my neurologist!  I just wanted to SCREAM!  Finally my neurologist has sent me to a gastroenterologist that works with people with ms.  I have only seen him once, but he is very nice and I felt like he was actually listening to me!
          Has anyone else had to hear a Doctor tell you that you have ms and you just have to get used to it?????
          Hugs to you all!!


          Jomi, Your links have been removed, please consider upgrading to premium membership.



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        • 0 votes vote up vote up

          Mztracy wrote Nov 19, 2008
        • I am so glad you found a good gastro doc!!  

          I know the feeling of falling in front of your kids, and others. Not so much fun! I learned to fall with grace. lol Then I would smile and say I meant to do that. All the while holding back the tears.  

          If a doc had said that to me...they would have probably kicked me out of the office after smacking him!! lol



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        • 0 votes vote up vote up

          Jomi wrote Nov 19, 2008
        • Tracy...I love that.."I meant to do that". I always look up and say..."what did I do?"
          Hmmmm...I'll have to consider slapping the next Doc. that says that to me!!  I can always say...oops!  spastic arm!!



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        • 0 votes vote up vote up

          Mztracy wrote Nov 19, 2008
        • lol yup you could!! I have to remember that the next tme i slap someone!!  

          How was your pain today? My back has been bad again, but i do not want the facet block again. Takes too much time out of my day!! haha



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        • 0 votes vote up vote up

          Jomi wrote Dec 6, 2008
        • Sassie, I used Lyrica for a while because I also have fibromyalgia. It worked great for a few months and then stopped working all together.
          I am on cymbalta now. My neurologist put me on it for depression, anxiety, and pain. I don't see much of an effect. My legs have been the cause of incredible pain lately too. I just saw my neuro. yesterday and she noticed that I have "ankle drop". She sent me to be fitted for an AFO....they are ugly, but I'm hoping to get some relief.
          Good luck...I hope the meds work for you!  Keep us updated.



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        • 0 votes vote up vote up

          Mztracy wrote Dec 6, 2008
        • neurontin made me nuts!!!  

          for my pain and degenerative disc disorder, they have me on norco and soma.
          norco is stonger than vicodin but without the tummy upset.

          I have constant pain. my neuro knows it’s the ms, but other have said no, ms does not come with pain!! YA OK!!! NOT!!

          i have not done the cymbalta or lyrica.



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          Mztracy wrote Dec 6, 2008
        • i have only found 3 neuros i like. 2 at ucla and mine here where i live. The others....pffftt they had no clue!!! lol

          the steroids should help some. for me they use to lessen my exacerbations.



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        • 0 votes vote up vote up

          Pjohns wrote Dec 8, 2008
        • I have used the Lycia before - I liked it.  I do not take it now because it was new at the time I took it and my insurance would not cover it. So I am on Gabapentin - I am talking with my neuro to see if I can switch back.  I also have issues with waking up at night due to the spasicity and cramping.  It is not fun!  I have done the steriods but that doesn’t really seem to be that terribly helpful to me.  It does calm the nerves down a bit but not enough for me.



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        • 0 votes vote up vote up

          Pjohns wrote Dec 8, 2008
        • Personally - the Lycia worked better for me... That is why I am going to speak with her to see if I can get switched back.  The side effects from the steriods were so intense.  The heartburn, hot flashes, weight gain, “motor mouth“,—I just really avoid doing the steriods again...  I hate them...



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