Active MSer? Introduce Yourself Here!

[tkotko]

Keep Moving to Keep Moving...

That's what one of my PTs told me a couple of months ago. Just diagnosed at the end of March. Doing Rebif. Not sure how I know that it's working other than I haven't gotten worse, perhaps a bit better since I started it. I can say that I fall A LOT less often since I started the injections, so I guess it is making some difference. But wow, just the dx is still such a shock sometimes. I was always active, hiking, biking, travel...and I really really need to keep doing it to stay alive, I think. So far, mostly weird numbness and spacticity in legs (usually just knees down). Some days are worse than others, of course. It never completely goes away, but sometimes it just feels like I'm walking in a creek or something. Still getting my frame of reference. Have a cervical disc bulge, and that was the suspected reason for my issues for over a year. All so weird. I keep a good attitude most of the time, but I have my days... Anyway, it's nice to find this site! Thank you so much for being there, Dave! And PS, New Mexico is my favorite place to be in the US (though I live and work in the midwest--for now, anyway). Loved the stem cell/hope video.
Peace! Tam

[lusciousleaves]

Hi all. I'm new here, still not diagnosed, but having similar issues to MSers. Came in to ask a question of the active crowd, if you don't mind. I'll post it in the exercise forum.

[MeredithRX]

What a fantastic board! I stumbled upon this quite by accident tonight and I'm so glad I did!

My name is Meredith. I'm 35, married, and mom to 3 boys. I was diagnosed with MS in 2009 after having "mystery ailments" for years. I was so relieved I actually laughed when they finally diagnosed me. I couldn't believe I could finally prove I wasn't crazy! I've been on Copaxone since then.

I was never extremely active before my diagnosis. I decided after a brief period of trying to figure out what to do next, that I wanted to do a half marathon. Why? I'm not quite sure, but I would be darned if anyone would say I couldn't. *laugh* I trained for a year and finished that half marathon. I did my 11th one this past weekend and have several more scheduled.

I've gotten slower over the past few years (instead of faster, like all my non-MS friends seem to be doing *laugh* ). I can't jog much anymore and have become purely a walking participant. My foot drop makes things interesting and my right leg likes to start playing tricks on me as soon as I cross the 4-mile marker. But, I've decided that I'm going to keep signing up for these things and keep showing up until they tell me I have to get off the course.

My other friends sympathize, but don't quite understand. This forum could be fabulous for me! Thank you!

[AZgal]

My name is Lisa and here's a short run down of my story.

For my 46th birthday (in October 2012), I received the lovely gift of MS. It seems though that MS had a bit of memory fog and actually showed up anonymously a few weeks early for my party and then again a few weeks late, this time introducing itself.

I have to say it presented me with several very unique gifts though -- one being an amazingly unpredictable tingling sensation which has taken up residence in mostly the right side of my body. I say unpredictable because, well, you never know exactly where it is going to announce itself or if it's going to decide to stay in that one location for the entire day. Some days it's in my calf and foot; some days my back and shoulder (though that's not too bad, cuz then I can't feel the chronic shoulder pain I usually live with); and some days my right ass cheek is asleep and tingly all day (that's always interesting).

I've trained in martial arts on and off for the last 20 years. Though I had to take a couple months off when I first got sick, I am back in the studio. It was difficult at first to have to basically start over again, but I am back in the studio nonetheless and am determined to continue my training (with the help of my long-time training partners) for as long as I can.

Love your blog and this forum! Thank you.

[ActiveMSers]

Lisa, and others, I (and others) usually shy away from posting in this thread because if folks welcomed every new member it would become way too long, but at the same time, I know I want to say howdy. So in the New Year look for a new method to introduce yourselves that will be better suited to welcoming new members. With that said, welcome Lisa and Meredith (and everyone else)! Sure glad you found us!

[HETA78]

I can't even begin to tell you how HAPPY I am to have sumbled across Active MSers!!!! I was just diagnosed in December and have been feeling so lost and lonely ever since.

My diagnosis was FAST. November 8th I went to the ER with a serious case of optic neurosis. My left eye was pointing to the left and I had double vision so bad I could not even walk without covering that eye. I had my first MRI done that same day and was referred to a MS Specialist who ordered a VEP and very soon thereafter Lumbar Puncture and second MRI. Though the lesions are confined to my brain and my VEP, spinal tap and spinal MRI all came back negative/inconclusive, the neurosis was quickly followed by complete numbness of the left side, from the top of my head to the tip of my toes. RRMS was my diagnosis and we opted to start Copaxone asap.

My husband has been fantastic, it's just the two of us and our awesome dog. I couldn't have survived this diagnosis without them. But now, I feel like I'm stuck in this world of fear. I have recovered fully from the exacerbation, and aside from some strange vertigo/dizziness thing in busy environments, I'm feeling great. The hard part is that other online communities I have found seem to be occupied by people whose condition is further progressed than mine. I feel that since I feel pretty good and positive that I can beat this, I don't really fit in a lot of places. I am the only person that I know with MS (or so I think...) so I don't have someone who fully understands. Some of the resources I have found actually are a hinderance to me because all they do is make me fear the future. Sometimes I am scared to go to sleep because I don't know what tomorrow will bring.

ANYWAY, obviously I am wordy, but this group seems to fit me very well. Prior to dx, I lost 45lbs by eating well and working my butt off. Instantly my fear after dx was that I would digress. I refuse! I have been testing the waters to see how far I can push myself without going too far and am doing pretty well. Anyway, thank you soooo much for forming this group. I look forward to checking out more of the site soon!

[ActiveMSers]

Heta78, great to meet you and congrats on dropping those pounds! You found the right place. It'll take time to get your brain wrapped around this disease, so hang in there. We all know too well about that fear of the future, but hopefully you'll soon get to a place where it doesn't keep you up too much at night. Because not sleeping, well, really sucks and is unproductive. And then you are tired and grouchy the next day, and no one likes grouches. Keep working that butt off!

[DaneMom]

Diagnosed 2012

About 11 years ago my brother was diagnosed with MS. We were all devastated, heart broken, etc. Over the years I've seen him struggle with the crippling effects of losing a lot of his physical abilities (he was an ultra marathoner) and battle with fatigue.

Then I was diagnosed with FMS in 2003 after a shoulder surgery. In 2005 I was first screened for MS when some "white spots" were found on an MRI. While in grad school I began training for a marathon and then the fatigue started. Severe, unending, didn't think I could write another paper kind of fatigue. I finished my masters and left the doctoral program because I couldn't continue at the pace required.

Then my hands went numb. I assumed it was from the numerous hours I'd spent slumped over my computer but the Drs ruled carpel tunnel out. I mentioned the "white spots" and was immediately sent to a neurologist. A series of MRIs, a spinal tap, and it was confirmed that I have MS. I was diagnosed in August of 2011.

I cannot tolerate the DMDs, I tried but my symptoms and reactions were so severe I couldn't function. I found a holistic neurologist who agrees that the DMDs are the best option for those of us with RRMS but also understands that my quality of life was nil. I have made a conscious decision to choose quality over quantity of life. That being said, I'm doing everything holistically possible to take care of my brain. That is the focus of my attention nearly 100% of the time.

I have a private practice and work at an inpatient psychiatric facility. I'm owned and loved by 4 awesome Great Danes. I've started horseback riding (dressage) to stimulate neuron growth, increase mind body connection, and improve physical fitness. I take yoga classes and I meditate. I'm not back to running yet, the fatigue is a big bad wolf I'm constantly managing but I do feel as though I'll have the energy to start running again soon.

When I first joined Active MSers I told Dave I wanted to start running again. It's been a process to get to where I'm at now but I believe with all my heart that running is definitely in my future! I have no need or desire to run a marathon any longer but would be over the moon with a 10 or 15K. I'd be happy with a 5K too.

Oddly, this diagnosis has improved the quality of my life overall. I'm no longer waiting for the right time or tomorrow. If I want to do something, there's no better time than now.

[froto1963]

Hi!

Hi my name is Jim I was diagnosed Sept. of 09 My last four years was my worst had to quit working because of ms I'm currently taking Copaxone 2012 lost my father shortly after my brother and our 15 year old dog On New Years eve my wife left me now I know I must get active.

[ActiveMSers]

DaneMom & Jim, so glad you found us. Welcome to the community! Glad to hear you are both getting active. Hang in there and keep running, keep moving....

[Cvfactor]

Hi

Hi, Im Mark and I was diagnosed with MS in January. In 09 I was attacked with a disease called Acute Disseminated Encephalomyelits or ADEM which is very similar to MS but much more aggresive. About 30% of people with ADEM are eventually diagnosed with MS so it looks like I am one of these people.

When I was struck with ADEM I was completely paralized from them waist down but have since regained my mobility but have permanent disability (EDSS of 4). When I was dxed with MS I wasted no time getting on a DMD. I just started copaxane last week and Im hoping this puts a stop to my immune system attacking me.

Anyway, glad to join them forum and have enjoyed reading the different posts and blogs and look forward to reading more.

[ActiveMSers]

Nice to meet you, Mark. I recognize your handle. FYI, Copaxone might burn for the first month or two, but that sensation goes away. Welcome to ActiveMSers and the forum!

[Cvfactor]

Hi Dave, this is a great site. As far as the Copaxone, my doctor sent the prescription directly to the pharmacy and no autoinjector was included. So I called Shared Solutions to have them send me one, but in the meantime I am manually injecting.

It has been pretty painless and I think I will forgo the autoinjector altogether. Im just glad to start treatment at this point.

[Bree Solis]

New around here...

I don't see the post I tried doing yesterday, so I will try again.

Thanks for the information that everyone so willingly shares regarding their MS.

I am a 47 yr old female. I live in Las Cruces, NM and was just diagnosed January 30th, 2013, though I believe my symptoms began in 2001. Of course, I am just beginning my journey so therefore I have a "nice" range of emotions. Knowledge is power though, right?

I found a site - msfocus.org, they have a cooling program that folks may be interested in. The application process just opened on the 1st. These are free services...cooling vests, cooling hats, neckties, wristbands, etc... I know heat is a major factor for those with MS. Wanted to share that tidbit. It is a first-come/first-serve process.

Anyway, thanks for sharing and caring. I am happy to find this forum. I will be around...

Bree Solis

[ActiveMSers]

Bree, you are not going crazy. Your initial post was in the Member's Only area. I copied and pasted most of it below and removed the other posting from that category. So great to meet you! Well, except for the circumstances (getting diagnosed and all).... The neuros at UNM are great--tell them I said hi. Dave

Just posting for the first time. I have been going the motions for MS testing since October 31. On January 30th, dr said he is ready to dx MS, as many other things I have tested for have all come back negative. So, really a process of elimination. I told the dr. I definitely wanted the spinal tap to try to better confirm. I go Thursday for spinal results and then to Albuquerque NM for a second opinion. I am female...age 47. My first symptom was likely 11 years ago, but never had it checked out.

As with another poster, my symptoms are not terrible, so I have felt that maybe I should not join a "group", but then why not? All information I can gather is knowledge and knowledge is power.

Lots of thoughts, questions, ideas, etc... go through your head I have found. This site has been a great resource. Thank you.

I hope to get on my bicycle some more and get more active, lose some extra weight I am carrying and get to battling. I have had quite the range of emotions, but I have found through my research that this is okay and normal. Staying positive is going to be key.

I know many ppl with MS. I think it is strange that I do. "They" say .. likely everyone will meet at least 1 person with MS in their lifetime. My grandfather had it, and I cared for a teenager years ago that had MS. I also worked with another and had 2 customers with it as well, back when I sold Avon. And lastly, my BFF in high school, her mother had it.