Your Stories

Share YOUR story!

Do you have any stories you might like to share with others? Maybe some tips on how you cope with MS, or what new strategies enable you to succeed, or what challenges are yet to be overcome. Does a person you care about have MS? How do you spend your day? What hobbies fill your day?

Here, you can share some of your own hard-earned and hard-learned experiences with multiple sclerosis and how you and others have coped with its multiple aspects. Join us, and share some of the trials, tribulations, and a few laughs along the way! How about telling us your story?

Share your story by posting in the Comment Box at the bottom of this page.


24 thoughts on “Your Stories

  1. when picking along black walnuts, it’s most popular to fit gloves. Coco 1 ) Trim results in the Liquid carbamide peroxide gel capsule, really can take pleasure with the physical health and figure loss bonuses easily simply by taking a wonderful easy when you need to swallow islate.Akilah

  2. I have lived with MS for 19 years now. Need to have a 20th celebration! Mostly symptoms have been limited to fatigue and numbness of legs, left arm and left cheek. I was a top of my game dentist going into this. I had to cut my hours in half and took up Tai Chi, yoga and meditation once a week officially and incorporated parts of it into my life whenever the moment allowed. I have been taking glyconutrients from Mannatech from about 5 years into diagnosis of Remitting Relapsing. These seems to stop the fatigue as long as I was taking them. I continued to work half time.

    After a couple of years I started injections 3 X/ week with BetaSeron. Feel no different but did not progress. I stopped about 18 months ago when I heard thru neurologist that after 2 years on it the effects were questionable when continued as benefits were there long term.

    Recently I started Fampyra. 1 pill q12h. 1\3 of patients get good results with minimal side effects. It is a potassium channel blocker that allows better conduction of the nerves so symptoms can reduce in many ways. My right foot os less numb by about 70% after 2 weeks on it.

  3. Hi Carolyne. I’m delighted I found your blog. Ive also had MS for 15 years (diagnosed officially in 2001), went on Interferon for 3 years but stopped to go the “alternative route”. I’ve also become a Yoga teacher. Amazed at the benefits, I’m trying to encourage people to try it but Yoga for MS is not yet developed in Europe…. I’ll keep trying! I will put a link to your blog on my Yoga for MS – Yoga pour la SEP facebook page + through twitter. Lots of best wishes to all. Namaste ;-))))

  4. My advice to you all is, live to the fullest, love as much as you can, surround yourself with laughter, do as much and as offen as you can, and never,never, let the stares get to you! Been there done that believe me!

      • Busy man these days, play with my Granddaughter, who is two and a half! Swim, go to good life and wheelchair curl; what a blast and I am still as saucy as ever!
        lol Too my friends out there, never stop asking questions, if your not happy with you Doc, get a new one. I have seen as many as 10, they were going to send me to Toronto one time.Be happy not a cranky cripple and use it while you can or loose it! Be happy, enjoy life!

  5. I think this is one of the so much vital information for me. And i am glad studying your article. However should remark on some normal things, The site style is great, the articles is really nice : D. Just right activity, cheers

  6. hello blogger, I came across this website from altavista and read some of your several other pages. They are nice. Pleasee keep it up… Regards,

  7. Pretty good article. I just stumbled on your site and want to say that I have truly enjoyed reading your blog site. Anyway I’ll be coming again and I expect you publish again soon.

  8. My mother began having symptoms of MS in 1991 or so, vertigo, ringing in the ears and a general unsteadiness. After 6 months of disability, laying in bed, trying to feel normal, she decided that if this was how she was going to feel for the rest of her life, she might as well learn to deal with it. 5 years later, she was officially diagnosed with MS.

    By 1999 she was essentially confined to a wheel chair, physically she was a shell of the woman I knew, mentally, she was tougher than ever.

    On Thanksgiving Day, 2000, a blood clot caused he heart to stop, and she died within minutes. No doubt the result of her years of immobility. My life changed forever and I miss her dearly, my kids, none of whom were born when she passed, know her well though, her memory will always be with us.

  9. I wish you would allow people with all kinds of chronic illnesses post. However, I understand that this is specificallly geared toward MS. I have a different chronic illness, but I appreciate reading blogs about other chronic illnesses in order to develop compassion, a more open mind, and understanding. For example, I am unsure if I have celiac disease, yet I follow GlutenFreeCuppyCakes on wordpress. Thanks for making this blog. I’ll be reading and appreciating.

    • Of course you can post or reply! Many who don’t have MS do…feel free! The more we all share, the more we all find ways to manage our respective issues.

      Carolyne

  10. Marshall Gaskin
    True Account of His Experience with Baclefin
    Baclefin is a drug used for the Multiple Sclerosis patients who have cramping and muscle spasms etc. Marshall Gaskin, lives in Toronto, Canada, has Multiple Sclerosis and was prescribed this drug approximately seven years ago.
    When I phoned the Prescription into Shoppers Drug Mart the Pharmacist was shocked. He asked me if I knew what I was getting into. I did not know. He told me the drug was physically addictive and next to impossible to get out of one’s body. He said it had very severe withdrawal symptoms and that the effect of the drug while one is taking it has very severe effects on the body. Feeling I needed to do something that was prescribed by the doctor, I took it during the month of March. I experienced the following side effects from the drug. Catatonic: The drug produced catatonic states for hours at a time. If I was lying or sitting, even in an uncomfortable position, I would not move. I would not blink, I would not swallow, If I had any emotional feelings, whether happy or sad I would cry silently, tears rolling out of the back corners of my eyes, filling my ears, I experienced hallucinations like me crawling across the ceiling like a spider. Standing on the balcony looking down, I would see myself running down the street running in like an ape-like manner. I lost my will to speak or emit sound of any kind, did not want food or water, The cramping and spasms did subside but at such a cost I wanted off the drug within a month. I stopped the drug at the end of March, but experienced severe withdrawal symptoms: muscle cramping worse than before, severe headaches, clenching of jaw, running saliva, stomach aches, constipation, nausea, crying, depression. I continuously had to take small doses of the drug to calm these effects. It took until the end of September, before the side effects lessened enough that I could withstand the headaches. The chemical left my body by the end of October. I completely missed my summer. I spent it in agony, in bed. I am writing this as a warning to those who are or will attend the MS clinics for the symptoms of cramping and muscle spasms. The MS Foundation knows the side effects but have recently started to prescribe the drug. I would caution you not to take this drug and to share this information with your friends who have MS.

  11. Carolyne is very lucky. I was recently (just this week) diagnosed with MS. I have been going through a range of emotions particularly anger and sadness (with lots of bouts of crying) but then, I found, quite by accident, Carolyne’s MS Means website. . .it was the most understanding and compassionate site that I have come across. . .indeed, it even made me think of things, that I hadn’t considered–and even had answers for them! Then, I found and read her blog. . .while still going through my motions, her site has been the greatest comfort to me thus far, more than even the people around me, who, while I know they mean well, just don’t understand.

    Although, I read that you have gone off the drugs, I do hope that you still do keep your blog up to date. . .until I get through my thing, your site reminds me that there will be some silver linings in the dark cloud. . .

    Thank you. . . :-D

Your Comments or Thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s