Forum Replies Created

  • cynthia-king

    Member
    November 17, 2019 at 7:48 am in reply to: Multiple sclerosis and swelling

    The only plus to being on a diuretic is I lost ten pounds from getting rid of some edema. and as far as shoes go the best solution I found was searching Amazon and found some men’s shoes, their wide is bigger than women wide. I’m a ladies 8, which equates to men’s six, (hard to find ) so I went up to a 7 or a medium. My years of high heels are long gone, and I never liked them anyway. Birkenstocks are my go-to in the summer, but living in the snow capital of the Continental US (Syracuse NY) requires boots, something I have yet to conquer. Incidentally, we also have the highest number of people with MS here, you might have seen the article, yet to see a neurologist who specializes in MS I drive. 2:hourS to Rochester. So do a lot of people.

  • cynthia-king

    Member
    February 14, 2019 at 12:13 pm in reply to: Do you feel that being kind can affect your wellbeing?

    Yes. Since my ms limits my contact with others, when I do go out I try to say complementary things to random people. You can usually can tell what complements people would like to hear: a cashier who obviously spent a lot of money on her nails I’d say, wow your nails are gorgeous, or somebody who dresses well I’d say your outfit is so on point. To people who don’t have anything specific, I say what a nice smile you have or did anybody ever tell you you have beautiful eyes? The thing is I am sincere. I don’t blow smoke up peoples’ skirts. I guess the smile I get in return is enough. It feels good to make others feel good I guess. But my family thinks I’m nuts and wish I would just shut up.

  • cynthia-king

    Member
    December 6, 2018 at 7:32 am in reply to: What is the first thing you would do if you were free from MS?

    My daughter asked me this question and I told her if I had one day free from ms I would go ice skating and then dancing. Not that I was ever very good at either, but I think I would fly around with reckless abandon, and skate away from all these people in my life who’s lack of confidence in my abilities has left me more timid and cautious than I like. As far as the dancing, just turn it up LOUD!

  • cynthia-king

    Member
    November 27, 2018 at 7:05 am in reply to: How do you survive a bad MS day?

    Well, like most everyone here the main issue is fatigue. You can’t do anything if you can’t get out of bed. I don’t shower on a bad ms day, no confidence that I won’t injure myself. I’ve had ms for twenty five years, you would think my husband would get it. To him, the way I do things is the trouble. If I would only do things his way I would be better off. But the problem isn’t ms affects my hearing. Ms affects my legs. They don’t do what I want them to, why should they listen to him? And PT. I can’t do it on a bad ms day. Every body thinks you can power through this disease. Well I can’t and that doesn’t make me a failure. I am happy to sit with my dog on my lap and a good book.i co exist with ms. It’s like my mother in law- it won’t leave. lol.

  • cynthia-king

    Member
    November 15, 2018 at 1:49 pm in reply to: How are you feeling on the Ocrevus treatment?

    I tolerate Ocrevus quite well, I don’t seem to be having side effects.

  • Yes. I have a hyper startle reflex. My kids would laugh at surprising me because my reaction was so extreme.

  • cynthia-king

    Member
    October 5, 2018 at 8:14 am in reply to: Which MS symptom impacts your life the most?

    Spasticity hands down. I am lucky to have left what I have left after 25 years, but spasticity. I get Botox in my feet/ lower legs and the helps so much for walking, it’s hard to walk if your feet won’t lie flat on the ground. It’s in my back and I feel like there are invisible magnets pulling me backward, and my spine is all messedup because the muscular imbalance has pulled my bones out of alignment, and now I am trying to resolve a spastic pelvic floor, but only on my right side. Ugh.

     

  • cynthia-king

    Member
    October 2, 2018 at 7:13 am in reply to: How are you feeling on the Ocrevus treatment?

    I have had my first split dose, and two regular ones with no side effects. I wondered if it truly was working, this past spring I seemed to have taken a turn for the worse, there was a decrease in muscle strength and such. But I worked with a physical therapist and feel like I have regained what I lost. Tysabri was my favorite of them all, it stopped the ms in its tracks and I had two good years while taking it. But the two year limit because I was JC+ meant I had to stop. So, back to Ocrevus. It is nice because it’s only twice a year and you need less MRIs. I see my neuro on Thursday after my MRI, so I can post more regarding clinical information, but I think from a patient compliance point of view it’s the best choice out there.