Active MSer? Introduce Yourself Here!

[RBW]

Hi misfits. I’m new to the MS diagnosis. Actually, I don’t even have a “definitive” one, because my tests were all contradicting each other. Doctors couldn’t figure out if it was MS, or NMOSD, or something they just couldn’t name with a darn acronym! Pleasure to meet you all. Thank you to Dave for this optimistic website. I wouldn’t have joined any other, too depressing. Just buying a Veloped, which I pray will enable me to hike again!!! My most favorite activity on the planet. I live in a forest for crying out loud

[ActiveMSers]

Angie, it is such a pleasure to meet you. I'm glad you finally got a diagnosis after all of these years. This is a delightful and optimistic group of misfits and I'm glad you found us. In just wish it had been a wee bit earlier! Virtual hugs,

Dave

[angiee1988]

Hi, my name is Angie I was in the U.S. Army and they suspected back in 1986 with a battery of tests scheduled and completed but as we all know it is hard to diagnose and back then after about 30 days all my symptoms would go away.Fast forward 32 years, and I was diagnosed officially 3.5 years ago after I found a physician who wouldn't take no for an answer.I was referred to a practice that specializes in MS but the doctor there completely ignored me an my concerns and 6 months later had the practice call me and leave a message that it was an emergency and I needed to call immediately. By that time I was seeing a different doctor who is rated number one in the state for MS treatment however he didn't treat anything he kept telling me my symptoms were not bad enough yet. I have no idea how bad he wanted me to get because the last time I saw him I could barely walk. My primary care physician frustrated at lack of treatment sent me to a 3rd doctor and his first words were "why haven't you been treated prior and how bad does he want you to get" Not once had any MS doctor told me until my 3rd opinion that I had PPMS and my new doctor told me the last doctor is notorious for not treating patients with PPMS

i was immediately scheduled for an Ocrevus infusion (of course had to wait on all of the insurance and drug companies)1st infusion has helped a bit at least I can walk. Not long distances or for a long time but at least from my desk to the ladies room without feeling like I'm going to collapse.

I use to run 5k's all the time just for fun swag, now I wish I could just run 10 feet but I will not let this disease control me!!
I am very thankful that I discovered ActiveMSers

Angie

[Drillerdou]

Welcome to the group Wryfox, you'll find most of us have similar dx stories. For me it was an eye doc that put 2-2 together and got the ball rolling. Diving into the research will drive you crazy- so many opposing views and conflicting research it's not funny. The common theme seems to be to keep moving anyway you can.
This seems to be a meeting place for like minded individuals. And Dave posts alot of great resources.

[Wryfox]

I was just diagnosed with MS(Multiple Sclerosis). But I am frustrated with the medical profession as it took three years to get here.

I posted the below text on a local discussion board a couple weeks ago(A NON MS BOARD), mostly to capture my feelings on the matter, but also to help others understand the medical profession and why it took so long to get to a diagnosis for something so important.

"I was just diagnosed with MS. I am in my 50s and this complicated the matter, as I am atypical for the diagnosis. But despite that, I have learned a few things during the diagnosis journey to figure out what was happening to me:

1) I am an athlete. I have been my whole life. This complicated things in addition to my age. The medical profession is tuned to the average person. Exceptional people are unexpected and harder to diagnose due to factors many doctors aren't familiar with. For one, athletes are very tuned to their bodies...they know more clearly what is normal and what is not. Convincing a doctor something was wrong was BY FAR the hardest part of getting a proper diagnosis. Why, because I looked and acted just fine. I had been compensating for symptoms for a very long time and adapting very well.

2) Trust your body. Only you know it best. If something feels consistently wrong, it probably is. Doctors can only go by a diagnostic analysis. Theorize, Test and Review results. But YOU know what you feel.

3) Describe what's happening as thoroughly as possible, as factually as possible, and in the language of medical professionals if possible. I learned that understanding what to call what I was feeling was very very important. DOCUMENTING the symptoms over time was also important. I found this was critical to making a strong impression, at minimum that I was very serious.

4) Don't accept simple answers. Occam's razor. The simplest explanation is most commonly true? Not always. I was told repeatedly my symptoms were due to "getting older", OR I was "exercising too much". NO, and NO.

5) Don't accept a BS answer. If the doctor is not asking you for more information, they are the wrong doctor for you.
A good doctor will dig in to understand what you are feeling. These doctors are rare. When you find one, make sure you tell them that they are rare and that you appreciate it. A good relationship with a good doctor is pure gold. I went through 5 doctors before I found one that would listen. And he got it immediately.

I remember the old joke that all you need in life is a good doctor, a good accountant, and a good priest. I can vouch for two of these....

6) Don't give in, Don't give up. I KNEW something was wrong. I KNEW it. Really pushing to get it evaluated properly took time to understand the medical profession. Getting that across required me to learn a new language and become a warrior for my own health. A breakthrough occurred where one doctor actually thought it was depression and tried to convince me of it. He send me to his partner who was a psychotherapist. She not only thought his answer was BS, but also gave me a Medical 101 on how to advocate for my own health. She understood my situation completely and saw how frustrated I was. Best thing she did was reassure me that I needed to keep pushing. Doctors are human. Despite structured medical training, they all have their own experience and learn their own way of fitting symptoms into boxes. Don't get put into a box.

7) MS is not the disease it used to be. 40yrs ago it was quite dire. 20 yrs ago it was considered a disease of exception. Meaning, if you rule out everything else it could be neurologically, then its MS. NOT TRUE ANYMORE. It is as much a disease of inclusion as it is exclusion. Yes, they still need to test to make sure its not something else that mimics the same symptoms (like cancer, Lyme, and oddly enough...syphilis). But there are diagnostics that can confirm it's MS. I've spent the last three months doing test after test after test. MS IS a disease that requires confirmation, as the treatment is lifelong. The good news being that the current treatments are quite effective at suppression of symptoms, although the disease itself is still incurable.

So the good news? Well, it's figured out now. I am told that at my age, it is not likely genetic(as apparently most are). I am told the other big way to get MS is by a trigger. A serious illness, particularly a viral infection, may spark the immune reaction that causes MS. I have had several serious infections over the past few years, so take your pick. This isn't perfect science, and much is still unknown, but I am buoyed by the extent of research into autoimmune diseases like this, so the future looks bright."

[sunnysing]

can only hope to get back to that level of exertion!

[ActiveMSers]

Dan! Man, glad to have you here. You'll hear gobs from me if you are signed up for our newsletters, so I'll keep my remarks brief. Plus, I gotta get in a quick workout!

[LivWell]

Welcome! Glad you found Dave and his bunch of MS-ers! LOTS of good tips here from folks committed to staying active and fit. (And hey, I'll vote for a tippy-toe walking in place as an olympic event.)

You're 100% right, whenever you find someone who specializes in MS or other neurological conditions to guide you towards maintaining your body it's huge. Stay tuned! Hope you find the info and insights here supportive.

Keep on Moving!

[JustDan]

Hi all -

I was diagnosed four years ago after about 18 months of on-and-off tingling, screwy vision, poor balance, uncooperative legs — you know the deal.

Told I had RRMS, I started a DMT right away. I'm pretty sure it has since transitioned to secondary progressive (my neurologist suspects so too but is waiting on an MRI I guess).

I'm 44 now and have never been much of an athlete. But when I was 36 years old (before symptoms or diagnosis), I started going to the gym regularly. I got in pretty good shape and developed a real gym habit, which only took a break in the first six months after my diagnosis amid bouts of self-pity and fecklessness. I work out at home, because of COVID and maybe forever more; I'd rather use my energy to exercise than to haul back and forth between the gym, even though it's "only" a few blocks from here. (MS has re-shaped my notion of what's close and what's "walking distance.")

I do about 20 minutes on a stationary bike five days a week (not easy, but a much better fit for my abilities than walking) and then a 10-minute leg/balance workout. Three days a week I do a more well-rounded strength and balance workout. It's not olympic-calibre stuff — unless walking in place on your tip-toes while you steady yourself on a chair is an Olympic event — but it gets the job done. The routines were developed by a local kinesiologist who specializes in working with people with MS and other brain malfunctions. (She was a HUGE find.)

Looking forward to soaking up the wisdom of this community.

- Dan

[LivWell]

Greetings LadyWithAFan, and welcome!! Lots of good info here, thanks to Dave , our fearless leader. You keep on dancing, no matter what it looks like, lol!

I can relate to the middle-school awkwardness. I routinely kicked my ankles when I walked, and was notorious for causing bodily harm to myself and bystanders during school sports.

Keep on moving!

[LadyWithAFan]

Hi everyone! I haven’t been officially diagnosed but the general neurologist is pretty damn sure it’s MS.

I am 49, and the universe has been telling me to exercise more for a long time. Being told after my MRI on New Years Eve, “you didn’t have a stroke, and I think you have MS” was a shocker. But I will take the hint and get moving more now.

The weirdest thing that’s going on for me (now that I can write and type again) is that my ability to dance has been affected. As in, I look like the most awkward middle-school kid...ever. Luckily there are no shows or music festivals for me to embarrass myself at.

Looking forward to getting some tips from you all and staying motivated!

[ActiveMSers]

AMF! Love the image. And thank you for the introduction after all these years. Your contributions here are priceless.

[AMFADVENTURES]

Although I never formally introduced myself here I thought I would introduce my avatar since naturally, there is a bit of a story. The picture was painted of me and specifically for me by a handicapped artist I never actually met. Apparently one of the girls in my yoga class, who was also an artist, had mentioned me to him. Judging by the picture, it must have been in the context of one of my more exciting rides, I did always relate the MS 150 experience to the group and although they were normally just hot, grueling rides occasionally there was some excitement involved. I don't know what she said to him but apparently this was his vision. It's not really me of course but it certainly does capture the spirit of AMF Adventures, especially the AMF Adventures with MS who's active on this site.

The real me is more like the guy below, slowly meandering through the forest up some back road soaking in the serenity of it all.

[ActiveMSers]

RunHappy! Nice to meet you and welcome. Sorry to hear about your diagnosis. (Just an fyi, the first year or so is a bugger mentally, it gets better in that department!) Ocrevus is a really effective treatment and way to start treatment asap--it matters.

You'll find this is a motivating group of optimistic misfits, from marathoners to wheelers like myself. Be safe during this challenging time wherever in the world you call home and I do look forward to your updates.

Welp, gotta run, er ride. It's sunny and 70 here in New Mexico!

[Runhappy8.2019]

Newly diagnosed

Hi all, I just diagnosed in August of 2019 and it all happened pretty fast, although knowing some of the symptoms now, I can look back and see little bits of MS emerging in my life. It all came to a head when I was on vacation and I had stiffness and numbness in my right arm and also kept tripping. I thought I just needed a massage and had overdone it working out. The day we got home, I got massage and it didnt get better, instead a little worse and I knew something was wrong. Doctor visit same day, MRI the next day, neuro a week later, another MRI a week later and two weeks later a confirmation by an neuro specializing in MS. During this time, my entire upper body went so numb I didnt know if I was hungry. I also started getting muscle tightening so bad my arm and wrist would almost double over, this was terrifying. Steroids finally helped this subside and a week after the steroid injections I could start running again. The muscle tightening episodes would almost make me cry and this has been the only thing that kind of broke me. I'm pretty optimistic to start so I knew as long as I could run, I could stay same, take that away and well let's not go there. In late October, I started Ovrevus and I pretty much don't have symptoms anymore except I seem to be very reactive to cold and it causes muscle tightness in my face and I gave in and got a script for a muscle relaxant. I guess I'm unique in that the heat makes me feel perfect, like my old self. We just made it to Hawaii before covid hit and I felt amazing and energetic! Now my next infusion is on hold pending covid subsiding. I really enjoy the posts on this site. I believe in mind over matter and being happy and I love learning more about MS and people who have it and I'm glad I found such a positive site full of workout peeps!! Thank you!