When and how to disclose my condition with a date

[SNOOPY]

maybe because you had not many options 30 years ago,you either had luck your ms was nice,or bad luck and a "***** ms".Today its not like that

Medina, I really hope you have an easy life with MS and you never see any relapses or progression. That's my wish for anyone with this disease and I truly mean it. It's great there are treatments for MS, but that doesn't mean you won't have relapses or progression.

Through the years I have seen (some) who take DMTs/DMDs progress as the years go by and have relapses. To date there is still much unknown about this disease. You are RR until you're not and you have a mild course until you don't. There really is no guarantees with this disease

I have been very fortunate through the years and I am very grateful.

Ant, please accept my apologies for taking your thread "off topic." I have no advice on the dating front, I was married for 4 years when I was diagnosed and we are still married. I wish you all the best with dating.

[Medina89]

Medina, I really hope you have an easy life with MS and you never see any relapses or progression. That's my wish for anyone with this disease and I truly mean it. It's great there are treatments for MS, but that doesn't mean you won't have relapses or progression.

Through the years I have seen (some) who take DMTs/DMDs progress as the years go by and have relapses. To date there is still much unknown about this disease. You are RR until you're not and you have a mild course until you don't. There really is no guarantees with this disease

I have been very fortunate through the years and I am very grateful.

Ant, please accept my apologies for taking your thread "off topic." I have no advice on the dating front, I was married for 4 years when I was diagnosed and we are still married. I wish you all the best with dating.

Thank you ,i wish the same for all of us

[pennstater]

im pretty much back to my old self (%95) so I can pull it off, thx for your feedback. I'm gonna just keep it to myself until some emotions and feelings grow for eachother.

When you say progress does everyone progress to have visible disabilities?

Sounds like a good approach.

Progression doesn't always mean visible disability. Fatigue is a huge issue for many. Cognitive impairment can also occur in a mild form. Numbness, tingling, pain, etc...

I have the above, but to anyone who doesn't know me, they would never guess I have a chronic illness like MS. People who know me well, can guage by my mood and speed at which I move that I am in a rougher than normal patch. If I disclose to someone, their usual response is that "you look so great" or "are they sure?".

On bad days, strangers may assume I am clumsy or uncoordinated or unable to focus.

Some studies point to damage done in early years leading to progression later. So here is hoping that by you attacking it early with DMT drug, staying both physically and mentally active, and eating well, you will never experience progression and if so, that it is minimal. Additional hope that if you do experience progression, that the research on repair will have yielded drugs/therapy that support reversal of progression!

Enjoy your dates!

[Ant1981]

Live my life

All I can do is live my life, can still do everything I used to do and excersize, healthy eating, meditation would like to think I have some control at least.

My neuro said MS 30-40 years ago, I would have a wheelchair in my later years but this day and age that's not common anymore. There's more research happening and I'm hopeful. I want my own downtown apartment a computer sowftware designer diploma and career, find a wife and maybe start a family and MS will just be in the background mostly... so I at least tell myself that but watever I'm going forward in life and am confident I'll be fine, maybe a less severe relapse or two down the road but I truly believe that. I'm almost back 2 %100 recovered from a bad dx flare, so I'm gonna live it up.

hope every newly dx patient feel hopeful, there's no reason not to and every reason to belive

[Jules A]

hope every newly dx patient feel hopeful, there's no reason not to and every reason to belive

I think the optimism is excellent, cautious optimism because unfortunately there are plenty of reasons why this disease has the ability to be devastating for any of us. My strategy is to hope for the best but prepare for the worst.

Neurologists-bless them, who made this thankless disease their career, tend to be overly dismissive, imo. Classic examples CIS, its only isolated until your second relapse which usually happens. Or years ago the didn't inform females of the familial predispositions of MS and in fact encouraged people to get pregnant without any consideration for the increased risk to offspring. It has only been in recent years it was acknowledged that this does run in families.

https://multiplesclerosisnewstoday.c...ing-new-study/

https://ghr.nlm.nih.gov/condition/mu...is#inheritance

"The presence of one or more lesions on an MRI scan indicates areas of demyelination, the more lesions there are the higher the risk is of experiencing a further attack and developing clinically definite MS. Studies have shown that the long-term risk for developing clinically definite MS is around 20% (1 in 5) when the scan shows only the lesion(s) associated with the CIS event itself, but this increases to 60-80% when other lesions are present on MRI."

https://www.mstrust.org.uk/a-z/clini...d-syndrome-cis

[Ant1981]

Anxiety

I think the optimism is excellent, cautious optimism because unfortunately there are plenty of reasons why this disease has the ability to be devastating for any of us. My strategy is to hope for the best but prepare for the worst.

Neurologists-bless them, who made this thankless disease their career, tend to be overly dismissive, imo. Classic examples CIS, its only isolated until your second relapse which usually happens. Or years ago the didn't inform females of the familial predispositions of MS and in fact encouraged people to get pregnant without any consideration for the increased risk to offspring. It has only been in recent years it was acknowledged that this does run in families.

https://multiplesclerosisnewstoday.c...ing-new-study/

https://ghr.nlm.nih.gov/condition/mu...is#inheritance

"The presence of one or more lesions on an MRI scan indicates areas of demyelination, the more lesions there are the higher the risk is of experiencing a further attack and developing clinically definite MS. Studies have shown that the long-term risk for developing clinically definite MS is around 20% (1 in 5) when the scan shows only the lesion(s) associated with the CIS event itself, but this increases to 60-80% when other lesions are present on MRI."

https://www.mstrust.org.uk/a-z/clini...d-syndrome-cis

My neuro said it takes about 2-3 years to come to terms with the disease. I know a handful of ppl that are 10+ years into dx and they are doing great, that keeps me optimistic

[pennstater]

My neuro said it takes about 2-3 years to come to terms with the disease. I know a handful of ppl that are 10+ years into dx and they are doing great, that keeps me optimistic

Yup, my neuro said pretty much the same. You have come so far already and taken a realistic look at your career, now working on one less physically demanding. That adaptability will help you on the way!

[Ant1981]

Career

Yup, my neuro said pretty much the same. You have come so far already and taken a realistic look at your career, now working on one less physically demanding. That adaptability will help you on the way!

Thanks, I'm doing Fantastic and feeling great, almost my original pre-dx, but the longer I can stay this way the easier it will be to deal with anxiety, I'm sure

i am working on a career chg (years in the marking) not only because of MS, but I've grown sick of physical labor and I don't want to do that for the rest of my life. MS just pushed me on that track sooner, prob would never went back 2 school if I didn't get my dx. So in a way it was a positive thing (my dx) just still battling thoughts of future disability. Those thoughts should subside and like to talk to my neuro about such things too.

[Marco]

When you say progress does everyone progress to have visible disabilities?

I was talking about the relationship progressing.

By definition, Multiple Sclerosis is a chronic, progressive disease, but how quickly you progress is highly individualized.

[Thinkimjob]

On the fourth date I would say, "you know, it's not the case now, but there could be some great parking spots in our future."

🤣🤣🤣 Excellent!

[Thinkimjob]

Mmm. I found out I had MS a few months after I met my man, so he knew from the start. It’s been 20 years and he’s stuck by me.

I was quite healthy for 13 years - but the last seven have been a slow, steady and seemingly inevitable decline.

MS is serious; no-one really knows what’s going to happen, and all the drugs have side-effects.

It’s probably not first date material. 🙄 Ask yourself if the situation was reversed, when would you want to know?

[trevvian]

I was talking about the relationship progressing.

By definition, Multiple Sclerosis is a chronic, progressive disease, but how quickly you progress is highly individualized.

I'd say there's a 50/50 shot of any given relationship progressing to visible disability...

Seriously, I do not intend to date again, but if I did, I would disclose fairly lightheartedly fairly soon.

But if it looked to be getting more involved, I would not let it get too serious without a pretty sober conversation and I'd strongly suggest my potential partner reach out to some caregivers and ask them what MS is really like to live with. Sometimes I think it's almost easier to be the one who HAS MS, because I have no choice but to live with it. A caregiver has to work hard while watching someone suffer. I'd want him to talk to my friend's dad, who watched his wife DIE with complications from MS & another friend's husband who watches his wife decline. That's a truer picture, I think, than I could give.

[Ant1981]

Early dx

I'd say there's a 50/50 shot of any given relationship progressing to visible disability...

Seriously, I do not intend to date again, but if I did, I would disclose fairly lightheartedly fairly soon.

But if it looked to be getting more involved, I would not let it get too serious without a pretty sober conversation and I'd strongly suggest my potential partner reach out to some caregivers and ask them what MS is really like to live with. Sometimes I think it's almost easier to be the one who HAS MS, because I have no choice but to live with it. A caregiver has to work hard while watching someone suffer. I'd want him to talk to my friend's dad, who watched his wife DIE with complications from MS & another friend's husband who watches his wife decline. That's a truer picture, I think, than I could give.

Well getting a fast dx, treatment right away I am truly hoping that I will be relatively unaffected and live a long normal life.. I'm recovered to invisible sx's and
I'm confident that medication can keep me healthy for a long time, I excersize regularily and eat right and just hope I can just live normally and enjoy the things I love. kinda way I'm framing it as a treatable illness, vast majority of ppl with MS are doing great, why not me?!?!

[Jules A]

I'd say there's a 50/50 shot of any given relationship progressing to visible disability... Seriously, I do not intend to date again, but if I did, I would disclose fairly lightheartedly fairly soon.But if it looked to be getting more involved, I would not let it get too serious without a pretty sober conversation and I'd strongly suggest my potential partner reach out to some caregivers and ask them what MS is really like to live with. Sometimes I think it's almost easier to be the one who HAS MS, because I have no choice but to live with it. A caregiver has to work hard while watching someone suffer. I'd want him to talk to my friend's dad, who watched his wife DIE with complications from MS & another friend's husband who watches his wife decline. That's a truer picture, I think, than I could give.

trevvian, you are spot on. I also believe this is the most realistic way to approach it. MS can be nasty in many cases even if it isn't until 20 years down the road. If something were to happen to my marriage I also have no plans of dating again.

Well getting a fast dx, treatment right away I am truly hoping that I will be relatively unaffected and live a long normal life.. I'm recovered to invisible sx's and
I'm confident that medication can keep me healthy for a long time, I excersize regularily and eat right and just hope I can just live normally and enjoy the things I love. kinda way I'm framing it as a treatable illness, vast majority of ppl with MS are doing great, why not me?!?!

Where is the data that supports a vast majority are doing great? And for how long?

[Ant1981]

My findings

trevvian, you are spot on. I also believe this is the most realistic way to approach it. MS can be nasty in many cases even if it isn't until 20 years down the road. If something were to happen to my marriage I also have no plans of dating again.





Where is the data that supports a vast majority are doing great? And for how long?

I speak with MS volunteer, she has ms, she is fine after 10 years ,i spoke with another. Individual and she is doing good raising a family, one of my oft phycoligists has MS,she is doing good, one of friends has a girlfriend and she plays volleyball and is good.. another friends wife has a friend who Is male and is great too., so why would I tell a potential partner negative things like like dying? Ppl have been known to live well with ms, the majority I speak with anyways