When and how to disclose my condition with a date

[Medina89]

Jules,well the medications are still too new to show any statistic ,and most ms patients have had it since before medications(ok i do not count the rebif,copaxone etc even my doctor said they are not helping and not worth the discussion when i was choosing medications)..the true medications for ms in my opinion are the infusions and stem cell

i live in Sweden,where they did research and it shows promise with rituxan and of course stem cell,rituxan has been used since 2008 and the first swedish ms woman that had a stem cell is still free of ms,as are 75% who did it since then,but the problem is of course it only works for rrms

I think is it fair to say today is not the same situation as before for rrms patients

[Medina89]

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

Exactly my point,and the statistics that we have show natural progression of MS WITH NO medications and still only 20% are in a wheelchair(not to speak of death)..so with medications it should be lower ?

[Ant1981]

Modern day MS

Exactly my point,and the statistics that we have show natural progression of MS WITH NO medications and still only 20% are in a wheelchair(not to speak of death)..so with medications it should be lower ?

Sure, I understand MS is unpredictable either on DMD's or not but there's a reason why they are prescribed, maybe it's newly dx naivety but I'm just gonna trust in my neuro... he seems confident that these days it can be treated and managed well.

"it's not the MS of yesterday anymore" his words.

[Marco]

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

I would be cautious about relying upon anecdotal information from others as indication of your prognosis. I could give you 10 names and each has a horrendous MS story, but that too would have no bearing upon your unique MS path.

Your posts are definitely inconsistent between anxiety and confidence in your future. While this is normal, that's exactly why you should be in counseling. Accepting MS can be difficult, but relying on denial and bargaining can lead to future problems. Take a deep breath and be grateful for the blessings that you have today - as tomorrow is not guaranteed to anyone.

[Ant1981]

Helps to talk to fellow msers.

I would be cautious about relying upon anecdotal information from others as indication of your prognosis. I could give you 10 names and each has a horrendous MS story, but that too would have no bearing upon your unique MS path.

Your posts are definitely inconsistent between anxiety and confidence in your future. While this is normal, that's exactly why you should be in counseling. Accepting MS can be difficult, but relying on denial and bargaining can lead to future problems. Take a deep breath and be grateful for the blessings that you have today - as tomorrow is not guaranteed to anyone.

I hear ya, people's experiences have no bearing on the course I will take. Seems that I'm looking for answers that are not there.

im still trying to learn how to deal with the mental aspect, will take years I'm thinking.

being relapse few for almost 8 months from dx and the FDA trials are pretty factual and my biggest fear is to be unable to walk, even that is a fact that the "chances" are minimal these days using DMD helps prognosis (given that it works).

i need a few years under my belt of good health and I'll be more comfortable with this whole thing.

I appreciate all your responses but this thread keeps growing cause I'm so friggin anxious all the time, I'm gonna have a talk with my neuro very sol and seek professional counselling.

[Medina89]

I try but i fail to see what is the positive side of trying to make MS look as bad as possible? ok we all know we have a serious disease,ms is no flue ,ms is a serious neurological progressive disease i know it.But what is the problem with beeing positive and having hope? its not false hope either,much is happening in the ms front,daily almost.So why would someone tell about only the worst case scenarions to a new date? of course that will scare her away,i know it would me

[pennstater]

I try but i fail to see what is the positive side of trying to make MS look as bad as possible? ok we all know we have a serious disease,ms is no flue ,ms is a serious neurological progressive disease i know it.But what is the problem with beeing positive and having hope? its not false hope either,much is happening in the ms front,daily almost.So why would someone tell about only the worst case scenarions to a new date? of course that will scare her away,i know it would me

Being positive is one thing, but if it masks as denial, and prevents acceptance and realistic expectations, it is another ball game. To expect that you will never have another relapse is setting yourself up for huge stress if one should occur. And if your partner is the same, they may go running.

To accept it may occur, and that I was doing all I could that was in my control, to learn how to deal with my fear, and go about living my life without constant fear of "what if" was my goal in the early days. Reality is that if I couldn't get there, how would I expect someone else to get there?

Me, I am all for positivity. When I disclosed to my now husband, it was along these lines:. "I have MS, which is a chronic and sometimes progressive disease. I am doing all I can by taking a prescription to slow and hopefully prevent relapses and progression, try to exercise, and eat healthy. A lot is unknown about MS, but more and more research occurs everyday that gets us further along. I have no guarantees, but then again, a lot in life is unknown, MS or not. If you have any questions or want to know more now or later, please ask. I am always open to discussing."

[Ant1981]

Difficult

Being positive is one thing, but if it masks as denial, and prevents acceptance and realistic expectations, it is another ball game. To expect that you will never have another relapse is setting yourself up for huge stress if one should occur. And if your partner is the same, they may go running.

To accept it may occur, and that I was doing all I could that was in my control, to learn how to deal with my fear, and go about living my life without constant fear of "what if" was my goal in the early days. Reality is that if I couldn't get there, how would I expect someone else to get there?

Me, I am all for positivity. When I disclosed to my now husband, it was along these lines:. "I have MS, which is a chronic and sometimes progressive disease. I am doing all I can by taking a prescription to slow and hopefully prevent relapses and progression, try to exercise, and eat healthy. A lot is unknown about MS, but more and more research occurs everyday that gets us further along. I have no guarantees, but then again, a lot in life is unknown, MS or not. If you have any questions or want to know more now or later, please ask. I am always open to discussing."

In the end of the day I just enjoy my dates and most don't work out anyways so I don't even mention it. I would only mention it if we got serious and then it's worth mentioning. Surprisingly most ppl that I mentioned to are not scared away, they don't think MS is a huge deal. It's known that it's highly treatable and manageable condition and I guess not everyone wants to get involved with someone that has a chronic progressive disease.

[Jules A]

Being positive is one thing, but if it masks as denial, and prevents acceptance and realistic expectations, it is another ball game. To expect that you will never have another relapse is setting yourself up for huge stress if one should occur. And if your partner is the same, they may go running.

To accept it may occur, and that I was doing all I could that was in my control, to learn how to deal with my fear, and go about living my life without constant fear of "what if" was my goal in the early days. Reality is that if I couldn't get there, how would I expect someone else to get there?

Me, I am all for positivity. When I disclosed to my now husband, it was along these lines:. "I have MS, which is a chronic and sometimes progressive disease. I am doing all I can by taking a prescription to slow and hopefully prevent relapses and progression, try to exercise, and eat healthy. A lot is unknown about MS, but more and more research occurs everyday that gets us further along. I have no guarantees, but then again, a lot in life is unknown, MS or not. If you have any questions or want to know more now or later, please ask. I am always open to discussing."

We really need a "like" button here.

[Medina89]

We really need a "like" button here.

I agree,that is how i see it ,,i was reacting to the comments about death,disabilty

[Ant1981]

Well said

I agree,that is how i see it ,,i was reacting to the comments about death,disabilty

I agree as well, it's well said, in a non threatening way, giving how MS is treated these days I think it informs the other party of what it is really like TODAY for most with MS (newly dx and on treatment).

[JerryD]

I feel that I should 'chime' in at this point.
My story is similar to many MS stories but every MS story is unique. I was married for 12 years when I was dx'd. I thought, at the time, I was a 'dead man' ! I found out that's not the case. You may feel, some times, that you would rather go that route!
The truth is MS is not fatal but the problems that MS causes to your physical condition can be.
I can't tell you how or when you should disclose your MS but I suggest that you don't sugar coat the seriousness of your condition. Good luck