Active MSer? Introduce Yourself Here!

[DreyaSF]

Not fully diagnosed with MS but love connecting with groups like this

So I haven't been officially diagnosed with MS by my doctors, but I can certainly relate to many of your stories.

In July 2008, at the age of 26, I was hospitalized with symptoms very similar to that of MS. From July 2008 - Oct 2008, I was hospitalized twice, went to rehab twice to learn how to walk again and gain my fine motor skills back, and had a 2 week stay in ICU on a breathing machine in the middle of all that. At the end of October I was finally able to move back into my apartment and by Thanksgiving time, I was walking with a cane.

Doctors still aren't 100% sure of my diagnosis, although they don't think it's MS. Kaiser believes I have ADEM (acute disseminated encephalomyelitis) and UCSF believes I have NMO Spectrum. Both are neurological autoimmune diseases.

So that part is established, I have an autoimmune disease. Whatever the disease, it falls under the umbrella of Transverse Myelitis, because my myelin sheath around my spinal cord was damaged from this autoimmune disease.

Getting hit with this at 26 years old was definitely a rude awakening and it's been quite a road! I thought I was the healthiest I've ever been at the time and was working out with a personal trainer, rock climbing, doing yoga and pilates....enjoying my youthful and active life here in San Francisco!

I am ever so grateful that my recovery is going well, almost 1 1/2 years later. I'm walking without assistance, working full-time, getting back into the gym, and trying to heal through natural, holistic ways by going to a nutritionist who specializes in chronic illness.

It's definitely still hard sometimes to not feel as physically able to be as active as I was before. But finding ActiveMSers has been a blessing and truly gives me hope that I can do many active things and get back into the things I loved to do...one of those things being snowboarding, which I thought I would never be able to do again.

My boyfriend sent me the link to the story, "Finding Hope on the Slopes." Her story nearly brought tears to my eyes because it made me so HAPPY to read such an amazing success story. It was a great feeling to feel one step closer to actually making my wish come true of one day being able to snowboard again, just by reading about your experience. I am so inspired to get back on the slopes and snowfall in Tahoe has been a good one so far, so I'm eager to give it a shot!

I'm so glad my boyfriend stumbled upon Dave's site! It feels really good to read people's stories similar to mine and more importantly, to see how staying active can help us all. Thank you for the motivation and inspiration.

[ms mcgee]

hi - new to ms and forum-posting

Hi, Im one of those young-uns that 'should' have several blogs and online networking memberships, but I don't. I do have RRMS - officially diagnosed as of Sept. 09 - so that's why Im here. One of my primary concerns upon diagnosis was that I'd not be able to travel again, and that worry led me to find this site. Thank goodness.

And...I just started Rebif TODAY. So as an avid traveler and outdoors person, keeping meds cool enough but not too cold will be one of my challenges. Hopefully it is the worst of my challenges for a long time. :b

[Nova_Steve]

Hello all,

My name is Steve I am 26 and my lovely wife was diagnosed in Oct. Although I am not the one going through this we are very close and going through this together. I am a car guy and I like tangible problems, this is a complete curve to me. Not being able to fix something is a strange concept to me so I have taken it the internet. It is encouraging to both of us to see a pro active group like this that encourages others inflicted with this to get out and be active.

Thank you to all of the other people who participate in this forum and have to live with this, my hat is off to all of you. It is really great to see that all of you are not letting this beat you. We has a cruise planned well before the diagnosis and after that were talking about canceling our first real vacation since we were married. Facing the concept of traveling with sharps and it's needed accoutrement seemed like an insurmountable task for anyone and depression seems like a likely pit to settle into. Just the concept of having a biohazard disposal container should be enough to push the majority of stable minded people toward the brink.

My dear wife has a long standing fear of injections so getting MS was one of those things that was a worst possible scenerio. Low and behold here we are. I feel so bad to see someone like this have to take a daily injection in various locations throughout her midsection.

Again thank you all, stay positive.

[nicole marsh]

keep up the activity

my name is nicole and i was diagnosed in may 07. i've been on copaxone and avonex since...so that is going okay but...i have been keeping active by doing gyrotonics...an amazing spinal based movement that has given me my life back...and i am now an apprenticed instructor and need students...of course i want to reach out to others with ms because of the nature of the exercise...i live in albuquerque, nm and am so thrilled about this and i want to see if any active or not people would like a shot at this movement...let me know...i'll be waiting

[mmapmom]

hello

My name is Melissa , I'm 42,and I was dx in June with the start of optic neuritis in my left eye in May, then started Copaxone in July.
I've probably have had MS longer, just thought I was getting older, needed more strength training, worked too much etc.

I've enjoyed running and staying active in the past, but this summer has been very difficult for me. The heat and humidity really did a job on me.
I get numbness everywhere, weakness in legs, but lately it's been getting much better(having it a lot less or it's not as intense).

I just started stretching and doing some yoga every morning, and I really would like to get back to some running. With 4 kids and a full time job the fatigue doesn't help! Any ideas?

This website is great! It's good to know that I don't have to stop doing the things that I enjoy doing, but might have to do them differently.
Thanks for being here.

[misspenny]

Hi, I'm Jen. I have posted a couple of times here but haven't introduced myself yet. I live in Rhode Island. I was diagnosed w/ MS in October of 2008, but I can remember symptoms going back about 4 years. I'm married, with two sons (6 and 3). When my balance permits, I do cardio kickboxing, step aerobics and weight training.

I'm really happy to have found this site. Thanks, Dave!

[lizzwithms09]

3-4-09

3-4-09 was the worst day i have ever had...see my family doctor has been my doctor my whole life so when my left side went numb and he sent me for an mri getting a call from him at 830 at night didnt alarm me. I was certain that the extreme exercise i had been doing in the preceding days caused my numbness so this call did not make me worry. BUT yes theres always a BUT...when he said "you have lesions that fit the diagnosis of multiple sclerosis" i totally fell apart. I mean i melted to the floor, sobbing, hyper ventilating, just freakin out!! i didnt know anyone with ms, the only things i knew were what i seen on tv...after my initial shock wore off and i was educated by my family doc and of course my new neuro i was fine. I know now that ms is not a death sentence and not everyone with ms will end up in a wheel chair. I now know that living with ms is hard but so far my problems are little. Im only 20 yrs old....so i had/have many fears about whats to come in life for mebut i think my ms will just be another hurdle i have to jump over!! I am sooo glad to have found this site!! ive been looking for people to talk to about this for, well since 3-4-09 so this is great!!

[dashlea]

Hello!

I'm turning 30 this year, was diagnosed almost 8 years ago, had a few relapses but nothing major...my biggest battle is fighting fatigue, stress and the Arizona heat (I'm in Phoenix).

Been on Avonex for six years, and the only time I've had a relapse was when I went off of it for six months. (I had someone giving me the shots for years, lost that person in my life, and was too afraid to give them to myself for a while. BIG mistake.)

AmyK, I'd encourage you to stay on the Avonex for a while...don't skip any doses...and see how it does. And for anyone battling mental blocks about self-injecting, I'd encourage you to do whatever you can to become self-reliant in this area...I hate doing it every single week, but it's a great sense of accomplishment each time I do it, like I'm taking control of my health.

Thanks for introducing me to the site Dave!

[MaryMac]

Hello,
My name is Mary. I was diagnosed in June 2008 and have been on Avonex since then. I live in Ohio with my husband, 4 dogs, 2 cats and some fish.
I recently ran my first 4 miler since my diagnosis (and since turning 40-ugh).
This site has been great for getting info so that I can stay active.
Thanks!

[cimmonz]

hi friends!
i was introduced to ms exactly 3 years ago this month! I've been on rebif for 2 years.

it's my belief that we have MS for a reason ~ to do something about it!

i'm an active member of Our Heart Greeting, a network of friends who give their art and energy to make a positive difference in the world of MS.

i'm really glad i found this site!

thanks, dave!

[KristaH]

Hi all, I'm Krista I'm 26 years old and was diagnosed 3 years ago after 8 months of getting the run around. I woke up one morning blind in my right eye and freaked out, went to the ER and they called in the nicest opthamalogist! He was just visiting UNMH but he was great. Explained to me about optic neuritis and what it might signify. I went back a week late and got an MRI which didn't show any lesions but did show a growth on my pituitary gland so months of seeing an endocrinologist and it disapated but my sight kept going and coming. I saw a neurologist but he was kind of an idiot, told me I had a 70% chance that it wouldn't turn out to be MS and 30% that it would. I liked those odds but it turns out he had the numbers backwards! So after a spinal tap and an excrutiating week after the results were in! Along with the lesions they found on another MRI they determined MS. I imediatly was put into the Combi study and have been ever since! Although I had to get off the drugs for a year since I got pregnant, i had my daughter on January 30th and 6 months later got back on the drugs. And have been having one relapse after another! 4 since June 08! So that is my story! Hope all of you are doing well

[agserra1]

Quasimodo

Welcome - hope you find this site helpful , others to learn from and talk to .. and hope you get a chance to get to know organizations in your area ..

Welcome .... agserra

[QuasiMondo]

My name is Armando, and I've been diagnosed with RRMS for about a year. I found this board after reading about it in an article of a Nissan enthusiast magazine. I live in New York, am an avid autocrosser and I'm a dedicated, unrepentant gearhead who love all things powered by gasoline.

I don't have a regular exercise routine, I work on cell phone towers, climbing up and down apartment rooftops with tools and parts should make up for that...I hope.

[agserra1]

Ms Support Group

Hello - My name is Adrian, and I am 51 years old ...

Having Ms , I too procrastinate , as I also have other issues , as most do, that came iwth my MS ...

I live in Santa Fe, NM .. and my therapist has suggested to get involved in a group setting .. to make friends who can relate to my situation ..

Problem I have is getting to them .. often they are too far for me to get to .. joining a CODA group for the anxiety is scary , as I wouldn't know how to explain ...

The MS Resource Center , here n SF, is a P.O. Box ... not comforting .. while they tried to get an excersize group going , that was suspended due to lack of people ...

It is scary for me, having that feeling of no where to turn to even make an attempt ...

Well, I belong to forums on healthcentral and while I get support from many on each individual issue , anxiety, depression, pain and all ... it's the human contact I am missing most ...

hanging in by a thread , trying to sell my condo and getting back to where I cam , Florida, has been an up & down experience also ...

So, that is some about me .. and I just wish they had an MS group here that I could go to .. where I could connect with people "live" ... adrian

[andersimp]

Hola! Caitlin from ABQ here...

This is Caitlin Anderson, married to David Simpson, thus the Andersimps. Daughter Bridget was born in 2001. My dx with Primary Progressive was in Sept 06. I stay active in local NMSS Division, aquaerobics, yoga, life coaching, consulting, and of course, parenting!
And, hey, procrastinating on Dave's website!