Active MSer? Introduce Yourself Here!

[Niko]

Hi everyone, I'm Niko, a 20 year old student. I was diagnosed last week, and am absolutely terrified. But regardless of the scares I get on and off from the research I've been doing, I keep finding little glimmers of hope, or optimism, to say to myself "hey, I can work through this." I am active, very healthy, independent and lively, and intend to stay that way. I am so glad to have found this site especially, because you guys are right, it's not all doom-and-gloom. Thanks so much for this.

Also, I'm into my second week of keeping a blog. I try to write one post a day, but somehow I've ended up with writing two a day. I guess I enjoy writing too much! Please check it out, feel free to comment and suggest anything I could write about, whether it requires research or not. I am focusing mostly on my journey in discovering all there is to an "MS Diet" and active well-being, but I hope to include other things too, in the future!

http://nikosfantasticjourneythroughlife.blogspot.com/


...and Dave, what a wonderful sense of humour. Rather than cry I've had a few good laughs while reading your posts.

[mullerm5]

Hello

Hello,
this is Michaela, new to the forum. I have a relative who has been diagnosed with MS and I thought it would be a good idea to learn from others' experience and path and share it with her by joining a forum and was glad to come across ActiveMSers.

[Jim829]

My story

I was diagnosed with RRMS in February, 2011 after a bout of diplopia as well has several other cognitive and physical symptoms. I had an MRI in 2008 when I had all of the same symptoms sans the diplopia, and it showed some lesions. The neurologist said the lesions could have originated from any number of causes, and the clinical symptoms might have been B12 deficiency, lyme disease, or a virus of some sort. I bought some B12, started feeling better, and went about my merry way. Looking back, I’m sure I had some manifestation of MS between 2008 and 2011, but it wasn’t until the diplopia that knew something major was going on. The 2011 MRI showed many more lesions in my brain, brain stem, and cervical spine. At the time of diagnosis, I was 49.5 years old and in very good physical health otherwise as a result of years of exercise, athletic involvement (I had been playing soccer in an over-30 league year round since I turned 40), and other lifestyle choices.

Since the diagnosis, like many others, I have been on a constant search to find any of the “pieces of the puzzle” to get this disease in check – diet, natural supplements, disease modifying drugs (I’m taking Copaxone), exercise, sleep, stress reduction, etc. Shortly after being diagnosed, I spoke with an individual with MS who had previously competed at the national and international level in nordic skiing and kayaking, and who encouraged me to stay active. He was, and so was his brother who also has MS. My current neurologist encourages exercise, and for the last year I have been hitting the gym religiously

I am very encouraged and inspired by others who, despite MS, stay physically active. Through internet searches, I found a number of inspirational stories of folks with MS who are staying active and competing athletically. Recently I started a Facebook page - “Athletes Fighting Multiple Sclerosis” - to share these stories of inspiration and to learn from as many MSers as possible what they are doing to stay in the game. I’m hoping that this site, Active MSers, will aide me in this journey.

Jim

[MarkLavelle]

What a long strange trip it's been...

Hi, I'm Mark. Originally from NJ, now in CA (20 miles south of SF). I'm 55 & married, with 2 college-age kids. My greatest pleasures are making music and day hiking.

After a couple of crazy (and often miserable) years I am totally ready to be active again!

(I'll understand if you skip my story - I know it's long!)

Thanksgiving Day 2009 I noticed that my feet went numb/tingly several times, and within a few days it became continuous. I assumed my herniated L5 disc was the cause, and went to my physiatrist. By the 2nd time I saw him I also had some sciatica, and we both just assumed it was all disc-related. So I had a cortisone shot and started physical therapy. But after the paresthesia spread to my hands (Feb. 2010), he sent me to a neurologist - it didn’t make sense for a lumbar disc to affect my hands (and I had realized that only some were posture-dependent).

After all the usual tests, I was told in Sept. 2010 that it 'looks like' MS. Because only one lesion showed up on the MRI, my 2nd opinion (from Stanford) wasn't ready to call it MS. The next brain MRI (Feb. 2011) picked up another lesion (or two? see P.S.) and the dx became official on 3/3/11.

In the mean time, my back got worse (legs going dead numb whenever I was standing/walking more than 5 mins.) and a thoracic MRI found a cyst blocking 1/4 of the spine channel. Needle aspiration failed, so I was sent to a surgeon and scheduled surgery to trim the disc & remove the cyst for June.

A month before the surgery I started having visual hallucinations! At first it was just weird minor distortions in my peripheral vision, but by the time I saw my primary at the end of the week (for pre-op approval), the hallucinations were nearly continuous. I told him about the MS dx and he immediately suspected optic neuritis (ON) and referred me to an ophthalmologist.

The next Tuesday on the way to work I was sure I saw cars passing me on the right when I was in the right lane! I took myself off the road that afternoon, and at an eye appointment a week later an ophthalmologist confirmed that my problem was neurological (i.e., not in the eye itself), and my right field of vision was effectively zero (hemianopia).

Back at Stanford, an MRI said the hemianopia was from a *stroke*, and all concerned thought it best to find out about the cause of the stroke before surgery. After a little more blood work and a brain “MRA” (MRI angiogram), the stroke doc called it "small vessel atherosclerosis" and recommended going on a statin (and cleared me for back surgery).

Since the surgery in July (and subsequent PT), I've been thrilled about my back. I've still got a lot of strengthening to do, but sciatica and numb legs are a thing of the past. The miraculous part is that by surgery time (late July) my vision had already improved - a lot! I didn’t trust my perception of it, but in Sept. the eye doc said my eyes tested normal!

So let's recap: no more back trouble, no stroke symptoms, and MS. I'll take it!

Paresthesia in all limbs 24/7 is impossible to ignore, but I wouldn't (usually) call it painful or particularly limiting (not that I need an extra dose of clumsiness!). Beyond that, I just have occasional and very short "attacks" of spasticity (hands, legs, feet) and what I call "electric torso" (tough to describe, but not 'hug'). I don't love it, but it's way better than not being able to walk or drive!

-- Mark

P.S.: I'm sure my two neurologists pointed at different areas when they ID'd the new lesion on my May 2011 brain MRI. I figure at least one of them must have been right...

[Outdoorslover]

Newby

Seasons Greeting! I was diagnosis with PPMS in the spring of 2008. Hindsight being 20/20 I can find symptoms of my MS for more than 20 years. It has been a very slow slippery slide down hill over a very long period of time. In the spring of 2010 my work as a Executive Director at a small Midwestern University began to go downhill. Once I told them of my condition it really went down hill. I choose the route of Long Term Medical disability rather than a long drawn out lawsuit. About that same time my MS began to spiral out of control which is what really prompted my "early retirement at 54".

I am on Copaxone and have changed my diet to that closer to a vegan, I do eat fish, seafood and chicken. I lost 50 pounds, my disease has mostly stabilized and I am feeling a lot better than I did just one year ago.

I love the outdoors so I go hiking as often as I can. I use the excuse of hunting and fishing just so I can be in the outdoors.

I look forward to great conversations!

Ron

[TJ1]

Hi -- am new

Hi folks -- I'm new to the board -- good to meet you.

Here's my deal: am male, married w/kids, mid 40s, diagnosed w/ MS in Spring 2010 (i.e., about 18 mos. ago.) Left eye went blurry, which lead to MRI, which led to Dx of MS.

Re: being "active" -- I run 4-5 miles outside 4-5times a week (circa 8:30/mi -- so, not crazy fast, but 'respectable')

I've had a couple of MRI since being Dx'd 18 mos. ago and disease is progressing (i.e., new spots), but, as I say, I have no problems "on the outside" -- i.e., the brain spots may be spreading, but *I'm* the same w/no loss of function.

So here's my QUESTION...

http://activemsers.wssnoc.net/showthread.php?t=768

THANKS, in advance, for your wisdom.

[dr_boost]

Welcome Robyn!

[robyn]

Hi Everyone, my name is robyn and I live in Sydney Australia. I was diagnosed almost 3 years ago and have been on Avonex ever since. What a brilliant site! Thank you so much Dave!

[dr_boost]

Thanks for the warm welcome!Even though it would be much more lucrative for me to be a either plastic surgeon, or a professional booster seat sales rep, I was born with the car bug.(For better or for worse.Haha). I had talked to you a while back when you guys did the Z collage on the back of Nissan Sport. You even used a pic of my '84 Lol.I also have a Titan, so you could say that I'm quite the Nissan head myself.

[ActiveMSers]

Dr Boost, I do have to ask, is one of your hobbies messing with cars (you may know that I'm into Nissans)? Or does your username apply to plastic surgery? Or something else entirely, like you sell those kid booster seats you see in restaurants?

Anyway, welcome aboard, doc!

[dr_boost]

Hello to all. My name is Nate, I'm 34 from a little south of Pittsburgh PA, and I was diagnosed last year with RRMS.

I probably have too many hobbies (haha), but I like to stay active both physically and mentally. Problem is, out of all of my activities, I am the only MSer, and that makes it hard to talk with others about how things may affect me, and how to work around them.

So after finding this site, I feel thankful to see other people like me living their lives to the fullest, and know that there is much I can learn here.

[Madeleinemom]

Welcome, Penguin and Leanne!

[Penguin]

You mean to say there's only one 'that guy'? Thought this was a forum...;p
Leanne, having done the divorce thing, around the same age, I can honestly say that I think everyone thinks that way...I was mistakenly diagnosed as menopausal at the time, thought no-one would ever look twice at me again. Um, I may have even used it as an attempt to put him off, when I met my man. Actually, I definitely did, when he asked me for a date (rare in Brits to ask!). I don't know what the moral of this tale is, maybe it's that good eggs may be uncommon, but they do exist.

[ActiveMSers]

Penguin, Leanne, welcome! It's so nice to meet the both of you. This group is super brilliant, super positive, and super, well, just super. Except for that one guy, who is a jerk. Oh, I kid.

Looking forward to hearing more of your stories and successes....

[magnul17]

Hello

Hi, my name is Leanne. I'm from Clarkston, MI. I was diagnosed in 2010 with RRMS. It was quite a shock for me and was, of course, the worst case scenario in my book. It took 4 MRI's and a lumbar puncture to come to this conclusion.

I've been on Copaxone ever since. Thankfully, on my therapy I've gotten feeling back in my hands, feet and my balance is back to normal. I'm not a fan of injecting, but can proudly say that I've only missed one injection in a year of therapy. I don't plan on missing anymore. The guilt I had in missing that one injection really bothered me. I have a good excuse. I didn't make it home from a trip in time and had run out of meds.

I'm 33, divorced and currently single. I am the momma of two cats and no kids. I'm going to be honest and say that the thing that bothers me the most about this disease is wondering if I'm going to find someone who will be able to accept me AND my newly acquired disease.

I come from a family that has two pharmacists so believe me, I get enough counseling regarding what I should be doing. I'm looking forward to interacting with you all and making new friends who know how hard it is not knowing the future.