Merry Xmas, here is your MS

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Re: Merry Xmas, here is your MS

Postby Skye » Sat Jan 07, 2012 7:22 pm

You will read a lot of testimonials from people about their experiences, their symptoms, and their treatments. Symptoms are similar to the disease, but everyone gets different ones. It's very frustrating until one day you realize, this is it. I have it. I'm stuck with it. What can I do to make my life easier to manage. That's not always easy--choices never are, but my story brings hope to those who can't afford, are afraid, or refuse to take drugs. I am at the other end of the timeline of RRMS at SPMS. I had excruciating symptoms at the age of 23. It was 1984. I had no idea what it was, no healthcare and chalked it up to really super bad arthritis (it runs in the family and it's humid up north). I couldn't get out of bed without using my arms to pull my body up off the bed, lift my legs onto the floor and slowly stumble around until I could walk after about two-three hours. It was painful and I took a lot of ibuprophen. It lasted about four weeks. It did not come back until about 2006. I never knew what it was until I learned about RRMS all these years later. Needless to say, I took no drugs. I also have memories of a grandmother on my father's side, who they thought had arthritis. My only memories of her are that my grandfather would help her to her chair, sit her down, feed her breakfast, and she would stare out the window all day long and make funny movements with her mouth (like a cow). She was obviously heavily drugged. I have lost contact with that side of my family, but my point is that I went 22 years with no flare ups and no drugs. Today, my life is very like my grandmother's. I wake up, I go to my desk, take some Tylenol, and wait for the hugging pain to subside. I'm clumsy and in excruciating pain throughout my torso. I am back to the point of picking my body up with my arms and that makes my muscles in my shoulders hurt and gives me headaches. So, maybe the drugs work for some, but I am one for who drugs weren't used and there were no flare-ups. There was an initial bout and then 22 years of living a good life. Now, I've come to terms with my life and adapted to the migraines, fasiculations, blind spot in my eye, pain and clumsiness, slight speech and lung problems, but I've enjoyed a good life, dedicated my life to teaching, I still teach online, and until they day that the body gives up, I will have adapted and feel good that I made the best of the circumstances I was handed. Everyone is given hurdles. I don't think ours are any greater than those of others. It really feels like it sometimes, but those times pass. So, James, keep sharing, keep positive thoughts, and remember the things you DO have to be thankful for--you'll get through this. One last word, the Terry Wahl book makes a lot of sense. It's called: "Minding My Mitochondria". Also, keep networking. It helps. :)
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Re: Merry Xmas, here is your MS

Postby NHE » Sat Jan 07, 2012 10:55 pm

Hi James,

jcoleman316 wrote:I got my rebif yesterday. The nurse will be here monday to show my wife and I how to use it. Im nervous about side effects,.I know theres no cure,. but I'm really hopeing to get back to some kind of normal. At least feel that way. My hand and balance are progressing really well. Got a hacky sack that I constantly fiddle with to try and get some dexterity back.

Some people have very little side effects from Ifn-beta. Others, like myself, experience very severe side effects (mine were with Avonex). It varies with the individual. To help manage the side effects, I would recommend taking ibuprofen. Try 400 mg at the time of your shot or perhaps 30 minutes prior and then another 400 mg every 5-6 hours afterwards as needed.

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Re: Merry Xmas, here is your MS

Postby euphoniaa » Sun Jan 08, 2012 7:10 am

jcoleman316 wrote: My hand and balance are progressing really well. Got a hacky sack that I constantly fiddle with to try and get some dexterity back.

Hi James, here I am again with some of my experiences getting my own hand dexterity back. Not sure if I can finally finish the post this time - I keep screwing it up. Since I post about this topic regularly, I'm trying to add links to threads and just quote my own self from them to avoid re-writing. :smile:
Hope it makes sense this time and that the info is helpful!

Here's a thread where someone suggested the “Prohands” general-discussion-f1/topic16926.html

And here's my post in that thread posting about the one I use - the Thera-band hand exercise ball.

I definitely want to try one of those (the prohands), especially since I'm a musician (a musician with a finger tremor) and typist. I've been talking about my own great results from using hand exercise balls for a long time, so I'm anxious to try the one you've recommended, too.

My hand/finger exercises have given me enough control that I no longer hit double letters with every stroke of my left hand and I can now play every note of a piano piece, although more slowly than pre-tremor. It's been nothing short of amazing to see the difference that hand exercises have made in my life.

Here's a link to a thread where I gave my experiences:
Here's a link to the brand of ball I've been using (I get no profits from this one either.) You can find them at all different prices on the net, however, but the main link gives the different resistance weights. ... oductID=21

I actually bought the balls for everyone in my family for Christmas one year. (If you can believe it, I've been the healthiest person in my family for awhile. )

Theraband ball resistance sizes:
yellow - 1.5 lb (super SOFT - great to squeeze between fingers)
red - 3 lb
green - 5 lb
blue - 8 lb (the original one I got at a PT session. It was pretty stiff until I got used to it. I would start with a lower weight, like a 5 lb.)
black - 17 lb (Yikes. Too hard.)

And here’s a link to a thread about intention tremor where I posted about how the exercises helped my arthritis, too.
Quote from me:
I was given a therapeutic hand exercise ball at PT several years ago, which I kept forgetting to use. Then I started doing 5 minutes of specific finger exercises with it twice a day a couple of years ago while I used eye drops. I noticed the benefit immediately, but now, although I still feel the tremor, I have 90 % control over it. It's been nothing short of amazing!

Before, I couldn't even touch any of my fingers to my thumb, but now I can do anything I want with them (a little slower than usual, though). My typing speed is superfast, no double letters at all, and, although I can't play piano like I once did, I can play every single note of any piece I want to try.

Another benefit of the exercising has been total relief from the arthritis I have in my hands. I haven't felt one speck of pain in my bulging finger joints during the entire couple of years doing these exercises. Seriously! And they used to really throb now and then.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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