This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

Hi James,



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.

NHE

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.
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.



And here’s a link to a thread about intention tremor where I posted about how the exercises helped my arthritis, too.
general-discussion-f1/topic8006.html?hilit=ball
Quote from me:

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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 or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)