Encouragement

[Tigergal]

My husband has just been dxed with MS and all of our friends and family keep offering excouragement. I know they are trying to be nice and help us deal with the shock of this. Well I hope they are right when they say that the meds will help him and he will probably be one of those people that is mobile for the rest of his life and has limited effects from this disease.

Then I get on here and read about people that stopped the meds for whatever reason and after however many years the disease is taking over. Or the people that have taken the meds and they still lose thier mobility. I just can't stop with the what if he is one of those that is greatly affected by this disease.

The unpredictable circumstance I find myself in scares me to death! Just not sure how to cope with this new part of my life. Everyone keeps telling me to live one day at a time. I want to but I am having alot of trouble doing this.

He is doing great or so I think...he does not seem down or depressed about the diagnosis. Any encouragement or words of wisdom is appreciated!

[Jules A]

To me the unknown course of this disease is probably the worst part.

Unfortunately no one knows, not your well meaning friends, not even the fancy MS specialists. Some people with MS do great for many years and then hit the crapper there doesn't seem to be any credible predictor that I have read about.


It forces you to live one day at a time but also gives some opportunity to hope for the best while planning for the worst.

[SNOOPY]

To me the unknown course of this disease is probably the worst part.

Unfortunately no one knows, not your well meaning friends, not even the fancy MS specialists. Some people with MS do great for many years and then hit the crapper there doesn't seem to be any credible predictor that I have read about.


It forces you to live one day at a time but also gives some opportunity to hope for the best while planning for the worst.

Not much I can add, Jules pretty much summed up MS

[hunterd]

jules said it all about the ms. do you have a network of family/friends that will lend a shoulder? you also need to take care of you! and your husband would agree with that. find a way to "blow of steam" and do that once a week or so. sometimes a good cry is needed. remember, if you can`t take care of you, how are you gonna take care of others? good luck.

dave

[KarenR]

Keep in mind that many that come to MSWorld (or any on-line community) are often looking for support for things that seem to be going wrong or are troubling...

New diagnosis, medication choices, symptoms, side effects, progression, family dynamics, etc.

You won't often find people who are diagnosed, yet living relatively symptom free, coming here for support. But those people do exist, many times over.

Just remember that what you read here is a little skewed towards those that need our support most.

Be well,

[Windwalker]

Tigergal,

I will classify this under words of wisdom...you seem to be a bit of a control freak. MS is unpredictable and can be a Roller Coaster ride, do not try and predict what the course will be...you struggle with that loss of control.

It will take him a long time to wrap his head around
what has happened to him IMO. I encourage you to be more optimistic...I think you have every reason to be.

I sense a bit of panic in your post. Please stop dwelling on a worst case scenario...it's not fair to you or him.

Be thankful for a supportive family, a disease course that appears relatively mild at this point and that you have this man who loves you.

[Spydre]

Keep in mind that with relapsing remitting MS, the sooner its treated the better the outcome. But a lot of the people on here who have mobility issues have either been sick a long time, or are now progressive. I myself only have mobility issues when the heat gets my MS acting up - so far. I bought a cane two years ago just in case, because I noticed that after sitting for long periods of time my back gets very weak. It's come in handy for me this summer.

As others have said, the MS path is individual for everyone - your husband may end up with no permanent impairment for a long time, or he could progress faster. Like a lot of people say - "hope for the best, but prepare for the worst". Right now I just take each day as it comes, and realize I'm not so bad off, especially when my symptoms have died down between flares.

[Scooter24]

Well said KarenR- It bothers me that as you said it is a little skewed here and newly dx people are only going to read the worst in most cases here.

[Jules A]

Well said KarenR- It bothers me that as you said it is a little skewed here and newly dx people are only going to read the worst in most cases here.

I would disagree and guess that we see middle of the road MS patients here mostly. The worst cases are those of us in nursing homes unable to communicate. Please don't discount them when we are talking MS statistics.

[Scooter24]

Well once again Jules we will have to agree to disagree, my wife also works in a large nursing home and is regional mgr for her dept over 4 other facilities, they all avg about 4-5 ms patients, most of which have had it Looongg before any DMD was available but most are still semi mobile, but my point is they also have alot of people with Diabetes that have had amputations, does that mean everybody or most of them with it will loose a limb?? No. They are also a large alzheimer's facilty, does that mean every older person will have it no. Hospice houses have alot of cancer patients but does that mean everyone will die when they are dx with it? NO

My infusion center has over 150 MS patients but only 20 or so go to support group mtgs and from what I have seen it is mostly the people with advanced stages of MS. So what about the other 130 or so? and I feel this forum is very similar as far as statistics go.

I have no problem showing all aspects of MS but I just feel your view is way too negative and I'm sure you feel just the opposite about mine.

[Scooter24]

Sorry I forgot one point,yes I have had to change my life some since my dx but then again at my age pushing 60 I had already decided there were some things that I could no longer do when I was 20 or 30 or 40 and if you don't believe that ask my wife . That is the same way I look at MS, I have not totally changed my life because of MS I still do what I am capable of doing , yes I push my self at times to do things but I have always done that my entire life but that is the way I was raised, my mom turns 80 next week and she still plays golf 2- 3 times a week, she gets a little sore and her feet hurt some but she is ready to go as soon as the girls call. She said if it wasn't for the golf she would feel like she is just sitting around waiting for her number to be called and I feel the same way with my life.

[Jules A]

Well once again Jules we will have to agree to disagree, my wife also works in a large nursing home and is regional mgr for her dept over 4 other facilities, they all avg about 4-5 ms patients, most of which have had it Looongg before any DMD was available but most are still semi mobile,

I have no problem showing all aspects of MS but I just feel your view is way too negative and I'm sure you feel just the opposite about mine.

With all sincerity I would ask if you think your wife is really being honest about the prognosis of MS patients she is exposed to? And if most of them are "semi-mobile" why are they in a nursing home?

The 20 MS patients you mentioned can only be considered a small number if we take into consideration the total number of patients in the 4 facilities and compare it to the number of people in the population with MS and I would bet it is fairly significant. With regard to the people at your infusion center I would guess that since Tysabri isn't a first line medication in most cases that could indicate something other than a mild course of MS at this point and they would need to be followed long term before making a generalization about their outcome.

Diabetics losing limbs isn't a lateral comparison and if we want to compare Alzheimer's which also isn't a lateral comparison the thing to compare would be the number of people with Alzheimer's disease that go on to be totally dependent as a result of that cruel diseae.

On the 12 bed neuro unit there were almost always at least 1 or 2 patients with MS usually very progressed and on the 14 bed inpatient psychiatric unit where I work we get probably 8 a year with varying degrees of disability which imo is significant considering this is only 1 of many inpatient psych units in the city where I work.

We can agree to disagree and I pray that you are correct in that most of us will never meet the dire straits I have seen in so many that suffer from this horrible disease.

[angelmiman]

encouragement

Hang in there. My husband was diagnosed last year and there is some question as to which type which also affects what treatment he should get. I suggest looking for a neurologist you really feel comfortable with and maybe talking to Social Work Services. We just started the Social Work visits and this seems like a very positive road to take since she has great insight on ways we can make both of lives more fulfilling.

[Scooter24]

Jules believe me my wife doesn't sugar coat anything, I have actually met the people with MS at her facility. 2 of the four also have other major med problems not related or caused by the ms, one claims she can't do anything and can't walk on her own but if her call light isn't answered as fast as she thinks it should be they find her up and walking around on her own quite well, the other person is very wealthy and has zero relatives so she checked herself into assisted living so she doesn't have to do anything herself, she still drives and goes out for lunch just about everyday.