Active MSer? Introduce Yourself Here!

[Afrayedknot]

Hsct

Hi, My name is Andy. I'm 45 and live in Michigan. Work as an engineer in the automotive industry. Love walking my dog and giving flight instruction. I was diagnosed end of 2016. Lately, my cognitive is worsening and spasticity is starting. Was taking Tecfidera. MRI from Tuesday shows new enhancing lesions. Wednesday I was accepted to the Northwestern HSCT trial in Chicago. I'm starting the washout period for the next three months. Scared about stopping tecfidera. I'm learning allot about the pros and cons with HSCT on here. Having second thoughts.

[Veronica]

Hi everyone,

I was diagnosed last year with rrms. Honestly, it hasn't been a year yet and I'm struggling to stay positive. I'm a very active type A person and MS has made a massive road block. I can't play soccer like I use to and that in itself is very discouraging. I'm only 20 yrs old so I'm going to have to find a better way to cope and adapt because I have a long road ahead of me. That's why I am here. Trying to be proactive about this whole situation.

I'm so sorry that you have joined our club at such a young age. I want to say how brave I think you are to have posted this...acknowledging our feelings, especially when first diagnosed, can be tough. Hopefully you have supportive family and friends, and hopefully they are educating themselves on what the disease is, and isn't. I've only been dealing with the diagnosis for 13 years now, and know that I am continuing to evolve in accepting without giving in. You probably will have tremendous highs when you accomplish something you thought was gone from you, or learn another way of doing that cherished activity. And, as Grady said, you can find new things that delight you and challenge you physically or get you to keep enjoying movement. You will also inevitably have low moments...and during those times you will need keep an eye on the total picture...that low moment is not all there is to you. What helps me during those times is to just identify it for what it is... a Sh**y time..... and just ride it out. It's a passing storm... One of the things I have learned from joining this club, is that I am so much stronger than the sum of all my muscles. You can still have an outstanding life with lots of accomplishments and joys. Keep posting. I'm cheering for you...

[cl3me]

Sideward Cobra, in the year after my diagnosis I felt like humpty Dumpty and it was overwhelming trying to figure how all the pieces of my life were going to fit together again.....that was 2003.

I found this book helpful in understanding the emotional roller coaster: MS and Your Feelings.

https://www.amazon.ca/MS-Your-Feelin...+your+feelings

I played rec league soccer when optic neuritis took vision in my left eye, tried playing the next season but I just never felt comfortable again. So I channeled my energy into cycling, and got back into equestrian even got my para classification and competed. I still have my horse, still bike, and even took up kayaking 2 years ago. Winter here is brutal, so do the gym thing to keep in shape over winter.

Hang in there, hugs.

[Grady]

I was diagnosed 39 years ago this month. I went through the same thing you are going through. It was very hard to accept. I decided to try new activities that I hadn’t done prior to my diagnosis. An example is Nordic skiing. I had never done any type of skiing pre-MS so I had nothing to compare my performance to. I think everyone who posts on this page has learned to adapt. I went from riding a carbon fiber road bike to a recumbent tadpole trike. Very hard adjustment but my neck, wrists and butt thank me. I just got back from the gym. I did my 30 minutes of cardio and 1-2 sets on the various weight machines. I used to do 3-5 sets. I’m 63 so is the decrease age, M.S or a combination? My guess it’s a combination. You will find many inspiring posts here. Larry is training to do the triple bypass this summer. If you are not familiar with what that ride entails, google it. An incredible challenge. I’m hoping he will keep us posted on his training and will post a pic of him crossing the finish line. Stories like those motivate me each day.

[SidewardCobra]

Hi everyone,

I was diagnosed last year with rrms. Honestly, it hasn't been a year yet and I'm struggling to stay positive. I'm a very active type A person and MS has made a massive road block. I can't play soccer like I use to and that in itself is very discouraging. I'm only 20 yrs old so I'm going to have to find a better way to cope and adapt because I have a long road ahead of me. That's why I am here. Trying to be proactive about this whole situation.

[ActiveMSers]

Jeanne! Welcome. I've been running around and meant to write earlier. Choosing a DMT can be confounding. I've done it too many times! Best of luck with your decision.

[PhoenixMSgal]

Hi, I'm Jeanne. I currently live in Silicon Valley (San Francisco Bay Area) but am retiring next year and have already bought a house with my son in Phoenix. Not looking forward to the months of heat, but with only one living next of kin, my son who lives and works in Phoenix, it's inevitable. I really wouldn't want to live somewhere without anyone I can rely on to help me when I need it. Besides, on retiree income, all the places I wish I could live are cost prohibitive.
When I'm not being an MS Warrior, I rescue dogs. I'm definitely one of those people who think "the more I know people, the better I like my dogs". They don't care that I have MS.
I'm currently on the precipice of changing my MS treatment from 40mg Copaxone to either Tysabri or Ocrevus. I'm leaning towards Ocrevus but haven't found out what my insurance will cover and how much. My neurologist is pushing for Tysabri. I think mostly because that is what they are familiar with.
I found ActiveMSers through looking into getting a scooter and stumbled across the reviews from here about a lightweight scooter that I could lift into my car and not need a lift. I looked into getting a lift for my car and it's outrageous. First I have to retrofit my car to take a hitch ($1,600), then buy the lift that works in a hitch ($1,000-1,500), then the scooter itself. Needless to say I haven't made any decision there either. I'm beginning to think having MS means one great big indecision. I do all the research I can and never seem to have enough information to definitively make a decision!
Indecisively yours,
Jeanne (PhoenixMSgal)

[ActiveMSers]

Mark, I'll speak for everyone here when I say welcome. We look forward to your contributions. With the great advice from folks here hopefully you'll be back and running in no time. - D

[Saintel]

Hi

This site is awesome!

Hi, I'm Mark and I was diagnosed with MS in 2015. Started Tecfidera soon after and have been on it ever since. I'm currently active duty
Army and will be medical boarded out soon. Like others in this forum I like to run and used to run 4-6 miles per day. However since my diagnosis I stopped running and most other exercises, recommended by my Doc at the time. I have a new Doc now and am slowly getting back into exercise, though I haven't tried running yet.

Glad to have found this site and look forward to reading the recommendations.

[ActiveMSers]

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!

[docmcguire]

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

[ChrisMorris]

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

[ActiveMSers]

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!

[RosieP]

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.

[xkissmekatex]

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!