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Old 04-20-2017, 04:57 AM
Colphin Colphin is offline
Junior Optimistic Misfit
Join Date: Apr 2017
Location: Australia
Posts: 1
Default 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 .
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Old 05-08-2017, 05:53 AM
Bat in a Hat Bat in a Hat is offline
Junior Optimistic Misfit
Join Date: May 2017
Location: Norfolk - United Kingdom
Posts: 1
Default So pleased I have found you all.

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!
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Old 05-08-2017, 02:54 PM
Toodles Toodles is offline
Junior Optimistic Misfit
Join Date: Apr 2016
Location: Colorado
Posts: 7

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.
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Old 05-30-2017, 07:57 PM
Coweyelens Coweyelens is offline
Junior Optimistic Misfit
Join Date: Jun 2012
Location: Plymouth, Michigan
Posts: 4
Default 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!
I did get the cooling vest I read about on here and I love it!
I have run 2 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
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Old 05-31-2017, 10:13 AM
Veronica Veronica is offline
MS Whisperer
Join Date: Mar 2013
Location: Columbia County, NY
Posts: 254

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!
Be thankful. Dream Big. Never Give Up.
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Old 06-10-2017, 03:35 PM
xkissmekatex xkissmekatex is offline
Junior Optimistic Misfit
Join Date: Jun 2017
Location: Wisconsin
Posts: 1
Default 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!
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Old 06-12-2017, 06:55 PM
RosieP RosieP is offline
Junior Optimistic Misfit
Join Date: Dec 2016
Location: Ottawa, ON, Canada
Posts: 4

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.
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Old 06-15-2017, 02:08 PM
ActiveMSers's Avatar
ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
Join Date: Jun 2008
Location: Albuquerque, NM
Posts: 3,560

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!
Dave Bexfield
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Old 07-08-2017, 02:54 PM
ChrisMorris ChrisMorris is offline
Junior Optimistic Misfit
Join Date: Jul 2017
Location: Cleveland, OH
Posts: 1
Default 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
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Old 07-08-2017, 07:12 PM
docmcguire docmcguire is offline
Junior Optimistic Misfit
Join Date: Jul 2017
Location: St. Augustine, FL, USA
Posts: 2
Default 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
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