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Active MSer? Introduce Yourself Here!

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  • ActiveMSers
    replied
    Chris, great that you found us, even though it took 11 years. Think of all the newsletters you have missed. And all of the missed opportunities to chat with new MS buds! Oy. We'll need to make up for the lost time.

    And Maia, fabulous to have you aboard. You are certainly among friends. Sorry to hear about your diagnosis. The first months can be really challenging mentally. BTW, keep up the exercise!

    Leave a comment:


  • docmcguire
    replied
    Hi everyone!

    My name is Maia. I was diagnosed with RRMS about 3 months ago after being admitted to hospital thinking I had had a mini-stroke. Brain MRI revealed suspicious lesion, so the neurologist ordered full spinal MRI. That showed other active lesions, so I was referred to an MS specialist (fortunately for me, there is an MS clinic nearby). He told me I have probably had MS for 10-15 years (I am 49), but I had not been aware of any symptoms until now.

    I started Copaxone about 6 weeks ago (3x a week).

    So far so good. My only symptoms now are muscle tightness/discomfort in my back--worsened by exercise and double worsened in heat...I live in Florida...

    Still learning and figuring out what MS means for me. Was very grateful to find this site. Have been using some of the suggested stretches, and appreciated the cooling vest reviews. SO HELPFUL!!! I also enjoy the positive, upbeat vibe of the site. Thanks, Dave, for creating this site

    Leave a comment:


  • ChrisMorris
    replied
    Hello everyone!

    Hi there,

    I'm Chris, nice to meet you all. I was diagnosed with hard-hitting RRMS about 13 years ago but have had a long streak of good MRIs showing no progression. This has allowed me to rehabilitate a lot of things back, or close to back, to pre-MS functionality. Not everything, mind you, but a lot still.

    My purpose in joining you all is two-fold. I'm looking for ways with which to manage fatigue in order to have as active a life as possible. Also, I want to forge new friendships and share in this journey of illness and recovery with you.


    Thanks again,

    Chris Morris

    Leave a comment:


  • ActiveMSers
    replied
    Katie, welcome! Glad you found us, and discovered that the Ben & Jerry's treatment has limited effectiveness. Keep up the great work and keep staying active!

    Leave a comment:


  • RosieP
    replied
    Hi Amy, I just started Low Dose Naltrexone a few months ago. My neurologist doesn't prescribe it, as there is (to my knowledge) only one study that showed an improvement in MS symptoms. I went to another doctor who works at an Integrative Cancer Centre near me. LDN is sometimes prescribed for people with cancer--particularly colorectal cancer. I am also on Copaxone, which I am considering quitting.

    Leave a comment:


  • xkissmekatex
    replied
    Hello!

    Hello, my name is Katie, I am 42 and have apparently had RRMS for over 17yrs, likely longer. I was unaware I had MS, but quite frankly relieved a little as this explains profound periods of fatigue in my life and other odd abnormalities I attributed or brushed off...such as my bra being suddenly too tight, like a boa constrictor, when I am tired or stressed. I thought I just needed a better bra, but hello MS hug! Or that I can't, really, really can't, not won't, work longer than 8hrs a day (and that is pushing it!) or more than 2 days in a row during the week. So how was I unaware of my MS? I am extremely active. I bike 10 miles a day, rain or snow to work and have been doing yoga for about 20 years, both of which my MS MD attribute to me leading a relatively normal life with such a high lesion load. Also, I eat pretty well and have been around the same weight since I was a teenager. I would feel just ill, tired, crabby, depressed etc. if I did not do some sort of activity in the day. I abruptly stopped all exercise and found comfort in Ben and Jerrys when my husband was critically ill. This, along with acute stress leads to me having saddle anesthesia and paresthesia to both my feet. 6 MRI's later show innumerable lesions, black holes, Dawson's fingers, and old lesions on my cervical spine and the new naughty active one on T10-T12, with a remote history of unexplained vision loss in my right eye that was clearly misdiagnosed. I was given the choice to resume diet, yoga, exercise, and reduce stress and see what happens because I am overall doing well on my own or start immediately on a med. I choice resume my life and scan me in 6months. I will likely go on a med in November because I am scared and have been so fortunate and unnaturally lucky I suppose. I just wanted to share how well a healthy life of activity has helped me and no matter what course I take now I will try to remain as active as I can!

    Leave a comment:


  • Veronica
    replied
    Coweyelens, glad you posted again! And I am very interested in your hula hoop couching... I got a weighted hoop a few years ago, and I just play around with it every so often. It felt as if it would help with balance, and so I searched around online for guidance, but never found anything. So, anything you can share in terms of developing a better routine with this would be much appreciated!

    Leave a comment:


  • Coweyelens
    replied
    It's been awhile....

    I just noticed that the last time I was on this site was 5 years ago! Oh, my, so much has happened...lol!
    I did get the cooling vest I read about on here and I love it!
    I have run 2 marathons....no more for me now...too much training
    My MS has been stable until 3 weeks ago when I experienced drop foot and still do. At least I can still walk, drive, hoop dance, etc.
    I have been doing yoga for almost 4 months and love it so much for my mind and my body. I became a hula hoop dance coach in 2016 to spread the love of the hoop and how it helped me to regain my balance.
    I thought it was time to reconnect

    Leave a comment:


  • Toodles
    replied
    Originally posted by ActiveMSers View Post
    Jackie! Welcome. So great to have you aboard. My only concern is that you may also employ a driving cat as part of your business. Smart if the walking is sketch.
    If Toonces could walk dogs I might consider hiring him.

    Leave a comment:


  • Bat in a Hat
    replied
    So pleased I have found you all.

    Hi,
    I live in the UK, I am not quite sure how I found this site! I think it was a link from an'all terrain wheelchair' site, however it is great to find so many people taking a positive attitude.
    I was diagnosed with Primary Progressive MS in 2007. I worked full time and was very active, swimming walking etc.Then the financial crash,the company I worked for, closed. No employment since.

    With PPMS, there are no 'relapses' just a creeping paralysis - just so annoying!
    I now use a frame to go around the house and a chair outside. I have learned to drive with hand controls, it takes me 10mins to drive to my local town, but another 10mins to get into the car and another 10mins to get out!
    I now do voluntary work, I can still 'run around the keyboard' - although I would rather be paid!
    I have taken on the local Town Council, to try and make the Town more wheelchair friendly.
    I am married, live with my husband, children are now grown up.
    Living in a different time-zone makes me look as if I am awake all night, typing!

    Leave a comment:


  • Colphin
    replied
    Aussie newbie

    Hi Col here. I have ppms and Crohn's disease. Mobility eyesight speech and hands affected but still surf, ride bike, motortrike, sculpt and paint. Just had my first exhibition opening and had the beach boys use my art as a backdrop for their 2016 tour. Ms sucks but life can still be an adventure .

    Leave a comment:


  • ActiveMSers
    replied
    Jackie! Welcome. So great to have you aboard. My only concern is that you may also employ a driving cat as part of your business. Smart if the walking is sketch.

    And mizcg: join at www.ActiveMSers.org and you'll immediately get an e-mail with instructions to get your discount codes. The gang here will do its best to keep you motivated in you quest to get fit again. Welcome, too!

    Leave a comment:


  • Toodles
    replied
    Hello, my name is Jackie. I was officially diagnosed in 2011 but believe I have had MS since childhood when I was known as "the kid with the sleeping legs". Looking back through the years I can relate issues I have had to the symptoms of MS. I am now 55 and am experiencing issues on a daily basis. I have always been active and still work out with my personal trainer three times a week. Not always as many reps and sets or intervals as I used to do but doing them at all is what matters.

    I live in Colorado and own a pet sitting/dog walking service, though much to my dismay dog walking has now gone by the wayside...

    Leave a comment:


  • mizcg
    replied
    Out of shap with great desire to get back in shape

    I am from Pittsburgh, PA and was diagnosed with MS in 2004 while living in Memphis, TN. I was a high level accountant who lost her job when she had a relapse (serious mind blow). This event gave me courage to give up that life and start a new one as a patient advocate. I go to DC once a year an lobby for healthcare.

    I was in great shape until 2012. I ran 5 miles almost every day of the week and lifted weights. I was a very healthy eater. I had a baby in 2011, which didn't cause the major weight gain. I gained 30 lbs with my pregnancy and was on way to lose the weight when I started having issues. I fell down steps with my baby in my arms. I was having balance issues. My fatigues and cognitive function were horrible. I assumed it was because of my MS but a year and a half later it was discovered that my heart was damaged during child birth. My left ventricle was damaged and my ejection fraction rate was down to 40%. My issues were due to the fact that I was not getting enough oxygen to my brain and not MS.

    My weight gained and loss of exercise caused a large weight gain as a result of eating fast food and no exercise. I am ready and finally healthy enough to start working out again and can cook meals instead of eating fast food. There was no time for home cooked meals because my husband had to take care of a baby and me.

    I need to start to fight through the fatigue so I can start working out again. Does any one have any diets that they discovered helped with their fatigue?

    I'm in the process of obtaining cooling equipment and can not find any discount codes for any products. Does any one know any discount codes. I can not seem to find any on this site.

    Leave a comment:


  • ActiveMSers
    replied
    Beth, welcome! Hmmm. Get you out of your comfort zone? Ask you anything? Oh boy, I don't know where to start. So I posted this on Twitter and Facebook to get help and linked to this post. Oh, jeeze.

    Leave a comment:

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