When did you get the diagnosis? Did you make any changes immediately?

[MMMMS]

I got the diagnosis in 2006 after a few years in limbo. The diagnosis didn't change my life drastically - work, family, hobbies continued. I was 34 or so when I first noticed symptoms, but chalked them up to working. I first saw a neuro when I was 40, so I think the life planning was going to change anyway by the time I got the diagnosis. We learn that if this doesn't happen, that will. So we tend to be even more cautious with our money, planning for things to not be exactly as we plan -if that makes sense -for example.

To date I don't have physical disability, but I do have cog fog more often, especially if I'm fatigued. That is why I left work. So, I think because I didn't have physical disability, the day-to-day didn't change much. Long term planning maybe changed a little earlier than for most people without MS? Maybe? But I would guess that most people by about 40 would start to think about life things less like a younger adult, anyway.

The psychological was the most difficult thing. That needed to change after getting the diagnosis, but it took time. I honestly didn't believe it unless I was experiencing symptoms, and didn't tell people for the longest time because it felt like a lie. People here said that I was lucky if I could still doubt it. True!!!

What about you? What was your experience right after diagnosis?

[marti]

I was dx in June 2001 when I was 51 yrs old. I started Avonex in August and had a very hard time with it. I was sick from one shot to the next. There was no 2 or 3 days of flu like symptoms... it was constant. Made my employment situation difficult since I was a supervisor. The neuro thought I was progressing and refused to admit my symptoms were from the medication. I was sicker and sicker and had to ask my employer to take me out of my position and let me go to part time. At this point I really believed, like the doctor, that I was just getting worse from the natural progression of MS. I went off Avonex after 3 months and found another doctor! By this time I was working fewer hours in a different department.

My daughter was serving in the Navy in England and on her way home on 9/11. Very stressful day as we didn't know where she was or what flight she took. She was supposed to be on one of the planes that went down. In fact, we didn't know where she was for about 4 days after the crashes. So of course, the anxiety took over and everything seemed worse for a long time.

I didn't retire until 2013. Fatigue was my main reason for giving up my job.

I guess that's about it for my life changes in the beginning.

[SNOOPY]

I was diagnosed in early summer 1984 at the age of 23 with symptoms since childhood. The only change was I became a daily walker/exerciser, once I was able to regain my mobility again. After our second child was born we decided it was time to move from our 2 story to a Ranch style home for my safety and ease. Our second Ranch style home was designed with MS in mind but we have made changes to it over time, we have been in this house for 23 years.

I have dealt with mobility issues from the beginning so our thoughts on where we lived was based on the possibility of needing space and ease of maneuvering in a wheelchair, powerchair or walker. Other than that I have lived a life that has been relatively normal, I travel (in a 5th wheel), I was a soccer mom, a taxi for my children and their friends, I love to shop, I get together with friends and family, and most of all, I enjoy my life even with all that I have been through.

[Boudreaux]

I was given a less physically demanding position with the company. They were very understanding and patient during my diagnostic period. At 24 years of age I was diagnosed on October 1, 2002. I didn't hide it from anyone, never have. I never complain about it either. I know people who complain about temporary inconveniences and think wow.... if only you knew. Been in the game for 17 years now and I'm in the best physical shape of my life, relatively speaking but I'm having a tough time remembering stuff. Names....forgetta bout it. Remember that show....nope. what about when this happened to so and so....negative.

Its probably going to cost me my job one day but until then....I'm grinding.

[pennstater]

I had just moved back to this area a few months before diagnosis in 2006. When diagnosed, I had focus issues that lingered from a 1993 relapse and some right hand tingling. But my seeking a neurologist was due to L'Hermites.

I postponed looking for a house a few years until my emotions returned to normal and thought I was ok financially. When I bought, I bought a rancher.

I continued to work long hours, got married, travelled, and lived life. Stopped working 2014, the focus issues worsened and fatigue wouldn't allow me to put extra time in any longer to compensate. Since I stopped, things have pretty much stabilized. So while a tough decision, the right one.

[Mable]

Fascinating topic. I guess I haven't heard people tell their dx stories in retrospect very often like this before.You all seem to have been strong and brave.

Me? Not so much.

I was completely blindsided by my diagnosis. I was 50 and only knew two people with the disease at the time. One was dead; the other was dying.

I quit all my clients abruptly (I was a freelance writer), left my boyfriend, stopped opening my mail or paying my bills, and moved to the Northwest to live with a beloved aunt.

I remember that time fondly now.

My aunt lives in Oregon, and I loved lying in bed at her house listening to a creek out my window at night. We'd go for long walks in the forest with her little dog in the mornings. And after dinner, we'd watch Jeopardy, pausing after hard answers to reason out our questions.

I attended an MS support group, and started seeing a therapist. There was a church a block away that invited me to sing in their choir. I made friends and ate good food. It was all trauma and sweetness.

After a few months, though, I missed my boyfriend. He had acted like my MS was no big deal, which is why I couldn't stand to live with him anymore. But I decided after a while that it might not be so bad to live with someone who was indifferent to my disease. Maybe I could be too.

So, I returned--and he was totally okay with it. No long relationship talks needed. We just picked up where we left off, and he's never spoken a negative word about it. That was 7 years ago.

Old clients soon started sending me work again and I caught up on my bills. Eventually someone hired me full time.

Today, I try to take good care of myself. You have to do that when you get to your late 50s anyway. I eat a healthy diet, exercise, no alcohol or cigarettes, and keep my weight in a healthy range. My next goal is to connect more socially.

So far, my neurological tests are normal, but my MRI tells a different story. I am not at all confident I'm going to skate through without disability for long. I fight fatigue, dizziness, a cramping calf muscle, and various other symptoms that may or may not be caused by MS. Otherwise my life today looks pretty much how it did before my dx...it just took me some time to get back to it.

I look forward to reading more from you all. Thanks for starting the thread MMMMS

[Jules A]

All the stories are amazing and so interesting but Mable yours really spoke to me. It sounds like you took steps of positive self care and nurtured yourself back to a sense of equilibrium. I'm picturing Oregon in my mind and it is bliss.

I was dx at 40 was quick and shocking after presenting with diplopia/nystagmus. I remember thinking it was a terminal brain tumor and then wishing in fact it had been a terminal brain tumor when I heard the words multiple sclerosis. My only knowledge of two people who had MS was tragic and horrifying.

I did what I do best I started scrambling. Evaluated my long term beloved career and decided it wasn't the most practical for longevity should I have issues in the future. I made the decision to return to college while working as many hours and saving as much money as I could for my precarious future. For someone who received this awful diagnosis at what should be the prime of life I am blessed in hindsight as I have been able to continue working and living my life without most anyone being the wiser. Friends and colleagues don't know and husband/family totally ignore it which I'm good with.

So I guess the short story is I kept working, finished grad school and maintained an active social life. At about 50yo I finally started enjoying the fruits of my labor by traveling and treating myself to a few unnecessary luxuries that I wouldn't have done years earlier. My journey has been a good one so far and although I also don't have much hope I will emerge unscathed in the long run I'm thankful and happy with where I am today.

[gargantua]

traveling hopefully

It was all trauma and sweetness.

Your phrase is like fresh air, Mable!

When I woke up completely blind in one eye on Jan 4, 2018 I didn't panic. Accustomed to fluctuations in vision that would eventually recover, I made another appointment with my ophthalmologist. I'd already been through 20 years of tests and specialist visits for vision and other symptoms. I'd held onto letters from my old neuro saying "There is no way I'd diagnose MS!" (exclamation point his)

Anyway, it was finally time for all of us to face it. DX could not have happened at a better time, or a worse time. I'd been laid off my job of 11 years in late 2016, the same year my only brother died at 49. 2017 had been a dark year working on house logistics and probate with my 95 year old dad. Then MS called, first thing in 2018.

So, life had already totally changed before DX. Now at 57 I am existentially hanging on by my fingernails, which I see as good exercise. I don't live with anyone. I just try to keep in touch with people, keep things in good order and take things one day at a time, knowing this precious life will always expect more from us.

[502E79]

What about you? What was your experience right after diagnosis?

Guess we all experience similar yet different thoughts. just like MS.

I told my tale before so to cut to the chase;

I could and did keep it to myself. Was not really visible (dropfoot only); Followed neuro regarding DMT (C); And because of neuro's attitude, decided I would "show him" and continue my existing exercise regime (8 years invested already, why not?).

Of the three only the third was of any true value.

Have to admit that the psychological "bending of the mind" took a little bit of time, but I realized that despite gradual loss there was gradual gain in ways only another MSer may recognize.

I'm not the same person I was at dx in '08. I'm better.

Now, would someone tell the MS that I got the message already!

[Jules A]

YNow at 57 I am existentially hanging on by my fingernails, which I see as good exercise.

This made me sigh and smile. I love your take on it and yes would agree it probably is good exercise and might come in handy if you ever decide to take up rock climbing. I hear finger strength is a necessity.

[gargantua]

This made me sigh and smile. I love your take on it and yes would agree it probably is good exercise and might come in handy if you ever decide to take up rock climbing. I hear finger strength is a necessity.

That's gonna take some serious visualization right there! Onward and upward Jules

[MermaidOP]

I was diagnosed (from symptoms, it was the olden days) fifty years ago. Since there was nothing to do for it, I kept on with a dance career. I moved with consciousness all day every day for 25 more years. Although I recognize my MS was a milder case with long periods of remission, I believe my good outcome was partly due to how my life in movement continually helped my brain reroute among my lesions.

I am SPMS now, I can't dance anymore, but I move in the pool for 1 1/2 hours every single day. I attack specific issues with exercise and know I've brought some functioning back. I continue to be a healthy-eating nut. It keeps me alive.

Good luck to all with this life-changing diagnosis. Keep moving and
Stay lifted,
Mermaid Susan

[502E79]

I was diagnosed (from symptoms, it was the olden days) fifty years ago. Since there was nothing to do for it, I kept on with a dance career. I moved with consciousness all day every day for 25 more years. Although I recognize my MS was a milder case with long periods of remission, I believe my good outcome was partly due to how my life in movement continually helped my brain reroute among my lesions.

I am SPMS now, I can't dance anymore, but I move in the pool for 1 1/2 hours every single day. I attack specific issues with exercise and know I've brought some functioning back. I continue to be a healthy-eating nut. It keeps me alive.

Good luck to all with this life-changing diagnosis. Keep moving and
Stay lifted,
Mermaid Susan

Thank you very much for this post, it affirms much of my approach and what I believe is central... Movement and attempts at executing any exercise one has trouble with, in as many ways as one can, to establish a "brain reroute."

[pennstater]

Thank you very much for this post, it affirms much of my approach and what I believe is central... Movement and attempts at executing any exercise one has trouble with, in as many ways as one can, to establish a "brain reroute."

Since you mentioned brain re-route, you may want to check out the book "The Brain That Changes Itself" by Norman Doidge, MD.

It has some truly inspirational and miraculous stories about recovery from various illnesses and trauma. It talks about the brain's neuroplasticity. One woman, even born without one hemisphere, and then the other compensated to help with the functions controlled by the missing side.

[502E79]

Since you mentioned brain re-route, you may want to check out the book "The Brain That Changes Itself" by Norman Doidge, MD.

Thank you for the recommendation!