Active MSer? Introduce Yourself Here!

[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!

[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]

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

[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]

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.

[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.

[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.

[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.

[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...

[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.

[GoatHerder]

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.

Hi Andy,
I had just finished building a new autogyro when M.S. hit me. I got to only fly it once, then permanently grounded myself after that. Gosh I miss it. I've been on Avonex interferon since diagnosis and have responded well to it the last 17 years.

My gait is terrible, so I go around outside of my house in a power wheelchair. For every door that has closed for me because of my condition, I have found a new one to open. No, I can't fly, or sail or many other things I used to enjoy, but I have found new outlets for my engineering background (EE) so in a way, M.S. has actually enhanced my life considerably!

Welcome to the forum!

[Afrayedknot]

Thanks for the encouragement. Sorry you had to hang up your wings. I'm glad you found other things to keep your mind active. My disability is not visible to the world. Yet. Cognitive problems are my biggest complaint. My neck has been killing me for a few weeks. Legs are cramping up. The doctor said it's from my lesion on my spinal chord. Only going to get worse he said. HSCT seems like something I should do sooner rather than wait for things to get totally out of hand. I still want to build that Wittman Tailwind.

[GoatHerder]

Thanks for the encouragement. Sorry you had to hang up your wings. I'm glad you found other things to keep your mind active. My disability is not visible to the world. Yet. Cognitive problems are my biggest complaint. My neck has been killing me for a few weeks. Legs are cramping up. The doctor said it's from my lesion on my spinal chord. Only going to get worse he said. HSCT seems like something I should do sooner rather than wait for things to get totally out of hand. I still want to build that Wittman Tailwind.

It was the leg cramps and vertigo that caused me to ground myself. I've not had any real cognitive issues to speak of. As an engineer and physicist, I was always in the top couple percent of brain usage. I don't do the Calculus in my head anymore, but I think that's more from non use than M.S. symptoms.

I find taking care of my farm and animals a very rewarding pastime now.

Wittman Tailwind sounds like a great project! I did keep my CNC plasma cutter from my old aircraft building days. I find it quite handy on the farm for making tools and farm implements.

[Afrayedknot]

My background is physics and engineering as well! And I fly for the challenge of it. What a coincidence. Maybe they should do a study on egg heads with pilots licenses. Personally think my type A personality got me in trouble in the first place.
BTW I fly in a club in Toledo. We have a Pietenpol aircamper..

[VanR]

Newbie here

Hi everyone! I was just diagnosed April 17, 2018, so very recent. I'm a runner and also very active at the gym, doing all kinds of bootcamp/tabata/HIIT classes. I had been dealing with strange "symptoms " and injuries from late 2016 and all through 2017. Last March, during a half-marathon, I experienced a "floppy" left leg and had a difficult time finishing the race. My regular time was usually anywhere between 1:50 and 2:04, but I finished with a 2:15. At first I thought maybe I had not trained enough. A few months later, during a different race in September, I experienced the floppy leg again, and my time went to 2:37. Fast-forward to November 2017, and my time was now 2:44, with extreme leg fatigue and tightness and just overall crappy gait. Left leg numbness has been with me for a few years now, but it was always attributed to compressed sciatic nerve. My family doctor sent me for MRI of lower back, and in January 2018, I was told that I had a herniated disc at L5-S1. Spine specialist told me to stop all physical activity, specially running! Prescribed PT and rest for 3 months. I followed his advice, though it was very hard for me to stop running and the gym, and became very depressed. I attended PT 3x per week for over two months, with no real improvement. In fact, I feel like my legs became tighter and way more achy during this period of time! My PT, who's also a good friend of mine, referred me to a different spine doctor for a second opinion. During regular examination, he found hyperreflexia, and ordered cervical/thoracic MRI, plus lots of bloodwork to find vitamin deficiencies and test for lyme disease. The results revealed inflammation and tiny lessions at C3 and C5, and he immediately ordered brain MRI and referred me to a neurologist. A few lessions found on brain MRI. I have seen 3 different neurologists since, and they all agreed on MS. I am relieved to finally know what is wrong with me, but also a little terrified. Two of the neurologists I saw recommended I get on meds right away and gave me a few booklets. One of the doctors said we could go on a "wait and see" approach. All three doctors seem to agree that this is "mild MS", as I didn't have any other symptoms. (But I have read that starting out with leg problems as opposed to optic is actually not a good thing!)

In the past month I have started running and going to the gym again, though it is a struggle. I was used to running a 10k about 5-6x per week, and now even 2-3 miles are hard, as my left leg gives out and I get a little foot drop. But I'm not giving up and I feel much better (emotionally) since I started running again!

In the past 3 weeks or so, I have developed other symptoms: mild pins and needles in my right arm/hand that comes and goes; pins and needles in my right foot, that also comes and goes! My right little toe seems to always be asleep recently. I experienced a little tingling on half of my face a few days ago and it really freaked me out, but only lasted about 2 days, and it's now gone.

I'm really stressing about starting meds, since all the side effects sound a little scarier than my current symptoms! But I realize that it might not be smart to delay treatment. Meeting with the first neurologist (the one who diagnosed me) on June 1st.

Sorry for the long/ramble first post. I'm just glad to find this forum, and be able to hear about others going through the same thing as me.

Oh, also I'm female and just turned 42 three weeks ago.