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Active MSer? Introduce Yourself Here!

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  • New to ms

    My name is Debbie, I was diagnosed with ms last week. Not too suprising since I have been googling my symptoms for years and had a feeling it would eventually be diagnosed as ms.

    Im very heat sensitive, live in St George Utah and our summer is already here-last few days 106 degrees and no relief in sight.

    Im going to order a cooling vest, I am 5'1" and 100 lbs. I've looked at many vests online thanks to Dave's testing and suggestions-thanks Dave.

    Wondering if anyone has any experiences with StaCool. This seems to be the vest that wont drown me in size.

    Any suggestions would be very helpful.

    Thanks so much!


    • Hello from India

      I was dxd in 2010 (RRMS), and after moping and moaning about it for a while, I discovered activemsers and realised it wasn't the end of the world.

      I wrote this post ( a few years ago and have been following the site for a while, I just never introduced myself here!

      I'm on Avonex, works pretty good, I guess, but it has made me photosensitive (that means I get an itchy rash even in the mildest sun). That plus heat sensitivity is not great in a tropical country, even though I live in a rather cool city.

      I think I'm doing well for someone with about 20 lesions in my brain alone (more in my spine).

      Should I sign off saying I love activemsers and all the cool people on it? Duh



      • Hello!

        I am Fred. Its nice to be here. I'm in my early fifties and I live and work in KY. I have been married for a long time to a wonderful and hugely supportive women; I have two fantastic teenage (grown-up?) daughters.

        I am passionate about all kinds of things: my work (I am a geologist and professor), family, travel, the environment, yoga, music, cooking.... Increasingly its been health and wellness!

        I was diagnosed with RRMS in 2002 and then re-diagnosed with PPMS in 2011. I am still pretty functional, but my vision is getting screwy and I have all the lovely balance and coordination issues that we deal with. I am quite convinced that activity, proper diet (I am pretty much paleo), rest, and stress reduction is key to managing this disease.

        I love the slogan of this site - MS is BS! I believe it to be true. Its nice to be here, cheers!


        • introduction

          Its been a while since I have been here. I just recently found this forum again. My name is Cliff and I have had MS since 2007. I am currently trying to be a lot more active and fit while also trying to loose weight. I have lost 40lbs so far and would like to loose at least another 20 to 40lbs. My biggest issue at the moment is foot drop as I get tired while jogging, around the 1.5mile mark. My current goal is to try and work up to a 5k race and to accomplish a Yosemite Half Dome hike. Thanks


          • So, I've recently been diagnosed with RRMS. I've had a few symptoms come and go over the years and mostly dismissed them. Except both of my hands went numb this summer while hiking Grand Canyon and I couldn't hardly keep my grip on my trekking poles.

            I went to the doc thinking maybe I did something to my neck. My first words to him were "Whatever you do, just don't tell me this is MS." A few MRIs, blood tests and a LP's MS.

            I just started Copaxone 40mg this past week, changed my diet to more paleo-ish, upped my omega 3s and vitamin D3, and read almost everything in this board. I also contacted the PVA since I think my first documented symptom was 5 months off of active duty. Cheers!


            • Introduction and a question

              I'm glad I found you, guys, because I live in Hungary and there isn't any platform for those who choose to be active in MS.

              I'm a 34 year old girl. Usually I exercise 5-6 days per week. I do pilates, squash, hiking, inline skating, running. Fortunately my MS looks benign for now, I had only 3 exacerbations in 10 years and all of them were primarily sensory ones.

              I've been an old fan of your website but I registered today because I have a question I cannot ask from my doctor because medical protocols overprotect the patients. I guess it is safer for doctors for legal reasons.

              I'm having an exacerbation right now for 3 weeks. The right half of my body has paraesthesia and my right arm is a bit involved motorically as it feels a bit weak and I have tiny coordination issues. My question is, when do you suggest to start being active again? Is it allowed to do sports during exacerbations? And the most important: I planned to hike the Olympos, the top of Greece 5 weeks from now... do I have to cancel this journey?

              I will be very grateful if you can give me some advice.


              MEMBERS: Reposted in the General forum. Please help gutti there instead of in this thread. Thanks! Link below.

              Last edited by ActiveMSers; 04-23-2016, 05:42 PM. Reason: Reposted in the general forum so members can answer questions more easily


              • Hi, I'm Kate. I live in Eastern Canada. I'm 53 years old and I'm "semi-quasi-almost-could be-diagnosed" with MS. Apparently, some of my symptoms are "atypical" which is slowing down the official diagnosis but for anyone's money right now, including the neurologists, I've got MS. I'm in the midst of an active flare up and just had to start using forearm crutches.

                I think I have a half-assed decent attitude about all this. I was a police dispatcher for nearly 25 years and I know tragedy. This ain't it.

                I'm world's most failed athlete but I'm trying to keep active because... use it or lose it. I'm a certified yoga teacher and have been maintaining my yoga practice well. I just started using forearm crutches and am starting to appreciate how much my fear of falling had limited me. I make a point of getting out for a walk everyday. Baby steps, baby steps.

                I'm married, one adult child, 2 fur-bearing freeloaders of the feline variety. I went back to school and finished my long abandoned undergraduate degree last year and I'm starting an accounting program in the fall, depending on my health status.
                Last edited by CanadaK8; 04-25-2016, 08:04 AM.


                • Hello - this is my basic info

                  I am a 48 year old male living in Los Angeles. I'm divorced, I have 3 adult kids who have been keeping me busy for the last 25 years but now they have all abandoned ship and I am bored. I'm new to online forum communities, but I lack social interaction with other MSers so I thought I would give this a try.
                  I was diagnosed in 2002 at age 35. I ignored my diagnosis for about 12 years and for the most part it was not hard to ignore, but then it caught up to me. August 2015, I tried to make an appointment with my original Neurologist, but he had retired so I saw his replacement. She was skeptical that I even had MS because I had not participated in any DMD program since my diagnosis. She ordered an MRI and then she believed me and ordered a course of solumedrol due to the amount of active lesions presenting on the MRI. December 2015 I started Tysabri and everything has been okay so far.
                  Why am I here? I'm here to learn and hear from other MSers about their journeys. I'm also here to try to find ways to increase my physical activity because I feel that is the key to maintaining good health, but I struggle with starting any new physical routine. Who am I? That's what I'm trying to figure out.
                  Last edited by Who_Am_I?; 04-29-2016, 06:04 PM.


                  • New kid in town

                    I'm the new kid here but I'm neither a kid (67 years old) nor new to MS (DXed in 1980). Over the past 36 years my MS has slowly progressed from being hardly noticeable to requiring a cane and a Bioness cuff for short distances, and a scooter if I want to travel a block or longer.

                    Just the same, I worked full-time in the news media in Washington, DC until retiring at the end of 2012. While at work I traveled all over the world and my wife and I still travel for fun, taking along my scooter.

                    I've been through a lot of serious drugs over the years - Solu-Medrol, Avonex (a participant in the first clinical trial), Tysabri and now Aubagio.

                    I'm now combining my writing experience with my MS knowledge to create an MS blog: It's purpose is to provide current info about traveling, working, treating and living with Multiple Sclerosis. It's just getting off the ground, and can't hold a candle to Dave's excellent web site, but I hope it'll be useful to some folks.


                    • MS is an inconvenience

                      In the eight years since I retired, my husband and I found that our brains were under attack. Mine had lesions and fingers--Why did Dawson leave his fingers in my brain? Balance and mobility issues have become problems to solve. When staying in bed didn't fix fatigue, I returned to water aerobics and fitness classes. And along the way I discovered Tai Chi for exercise of the body and mind. My husband began showing signs of Parkinson's four years after my diagnosis. After being assured that PD was relatively easy to live with, the diagnosis changed to Lewy Body Dementia--not easy to live with. So I battle two diseases, mentally, emotionally and physically. I haunt the internet looking for answers where there are none. I stay active for me but also so I can take care of my husband of 52 years. I am fortunate in having the love and support of my family. My son's family has moved in with us to help out. My weekly schedule includes two sessions of PT and teaching four seated Tai Chi classes. I also work out on a NuStep. My husband often asks why our brains are under siege. I have no answers. I only know I need to sidestep the inconvenience and keep moving.

                      Details: I am a 72 year old retired educator. I completed my doctorate 10 years ago. My son and daughter are 45 and 42 and they have given me the joy of three grandchildren. Born in Wisconsin, I have lived in Georgia for 35 years. I remain a Packer fan.


                      • New to the site, to ABQ, and semi-new to RRMS

                        Hey all!

                        I am Chele, nearly 40 years old (when did that happen?), and still very happily married to the best guy on the planet after nearly 18 years. Annie is our fur kid, she is a 2 year old border collie/ lab mix.

                        I had tingling / numbness in my face in October 2014. Lasted a week or so before I went to urgent care. CAT scan showed nothing. They did a bunch of Neuro tests, I passed them all. Sent me off as a "numbness" diagnosis and with a steroid pack and anti-virals because they thought it was bells palsy. I was not happy with the doctor and brushing me off like, "eh, numbness happens." I knew then something was wrong, I had no idea what, but I figured it was curable.

                        June 2015 my vision was disturbed. Then the tingling came back. I went to a primary care doctor after a week. He sent me to an ophthalmologist in case I had a detached retina. Nope. I pushed to see a neurologist on my primary's recommendation. None available that night. Went to urgent care in the morning, an hour before they opened. Was able to talk to the right people before they even opened and was ushered in the second after they opened. Bypassing check in and everything. It was 8am. Had my MRI at 11. Diagnosis of ocular neuritis and possible MS by 1pm. 1 gram steroids started by 2pm and they were trying to find me a room in the hospital for the next three days.

                        I reacted well to treatment. I was released three days later. I saw the neurologist MS specialist 6 days later. Told my story again. Then he finally read the MRI. Official diagnosis of RRMS came the morning of July 2, 2015.

                        And here I am. Trying to understand what life will be like and realizing every day is different and unreliable, but I'm still moving forward making plans. Plans which included a big move, and lots of change, but of which I can control.

                        I'm "mostly normal" most days of the week. Which is great! When the invisible symptoms of MS are active, I have a hard time being me.

                        The heat is starting to be a problem for me and I am exercising less... which is NOT OK. There was a recommendation on that recommended this site for a great review of cooling vests. That was a great recommendation and here I am!

                        If you're in ABQ -- let's be local IRL friends! I need new people. When I'm not here, I'm either working as a Project Manager, working in the garage at home, or playing at the Drag Strip.

                        Thanks for having me! =)
                        Last edited by girl1dir; 05-21-2016, 09:34 AM. Reason: word choice fix
                        girl1dir =)


                        • Hi! I'd like to become a member.

                          Hi,all! My name is Belinda. I live in Fredericksburg, VA. I was diagnosed with RR MS in January 2008. I recently retired (April 2016), and I LOVE to travel to see new things. I also love history. I would love to find like-minded travelers with MS.

                          I lead the only MS Support Group in this area, and I LOVE this site. Thanks, Dave, for starting such an upbeat and informative site for those of us who prefer to keep living actively with MS.

                          How do I become a member of ActiveMSers? I created a user name and password. However, the password is not working for me in the "Members, only" section.


                          • Great to read your post, Anchorman. I just retired after working in DC for years.

                            It's great to see someone interested in travel. Maybe we can start a special travel group on this site?


                            • Traveling

                              Hi Belinda,

                              A travel section on the forums sounds like a great idea. I'm pretty new here, as well, so I don't know if this has been tried before, but I'm sure someone here will chime in.

                              While I was working, I traveled all over the world for business. I stopped international business travel when I started using a scooter. However, I've ridden my scooter as a tourist in about fifteen countries and Alaska, since then, mostly in connection with cruises.

                              My wife and I won't be traveling for a while, because we have two young grand kids to keep us occupied. But, we have a Bermuda cruise booked for next June and I can post about that when we're on it. Meanwhile, I'll certainly chime in if I think that I can add to any posts that are written here that relate to places I've been.


                              • Thanks, Anchorman. My husband and I traveled to Bermuda on a cruise out of Baltimore a couple of years ago. I really enjoyed it. Since my diagnosis in 2008, we've also traveled to Alaska, India, and Brazil.

                                I thought I saw some special interest groups on this site previously, but I might be mistaken. Nonetheless, I did not see one for traveling.

                                I tried to click on the link for your blog without success. Would you please provide it, again?