Wife's RARE MS beating me down

[kimimiles]

Interesting review. Thanks!

[Mamabug]

Reply to this thread moved to here:
https://www.msworld.org/forum/showth...=1#post1521822

A new member has a mother going through similar symptoms; is looking for advice.

[mirey45]

My wife of 25 years then DX in 2004. Type A person, highly intelligent (4.0 MBA), etc. Couldn't take Rebif - to many side effects, allergic reaction to Copaxone, since late 2007 infused monthly with IVIG. Only uses a walking stick for balance. Slow start in the morning, some fatigue, some cognitive issues (Aricept helps).

However, in the intervening 9 years, she has tasered me, moved out of the bedroom for a year, hit me with trashcans, thrown many varied and sundry things at me, been arrested for assaulting a police officer, assaulted our grown daughter in front of our grandkids, assaulted our son for making a fire "wrong" in the fireplace, threatened to "break his bones" while he was recuperating from an operation, leapt on the church nurse's car as it was moving, asked not to come back after volunteering at over 4 different charities, asked to leave courses she's tried to take at some colleges around us. Some friends of ours are scared of her - less than 5'4", less than 120lbs.

Going on several rants lasting anywhere from 1/2 to a full hour that can be set off by saying a medicine I take has no taste or I was dropping Bible study or she felt our son did not answer her phone call with enough respect. Or a lady in her prayer group looked at her watch while my wife was talking.

Most recently, she accused me of having an affair, stealing money from her, plotting to have her "put away", "hacking" into her e-mail, monitoring her computer and filed for divorce; getting a restraining order against me after she again threw a sugar bowl at me, broke off a necklace I was wearing, ripped the shirt I had on, kicked me in the stomach and groin to the point I had to leave. She sent e-mails to my work telling them I'm stealing from them and they needed to watch out for me.

This after spending $100,000 remodeling the house, along with cruises in the Mediterranean and the Caribbean in the last 3 years.

I've had Pastors tell me to give it up, the police have said to me I need to look after myself, therapists have told me to stay away. But how do I reconcile this against now 30+ years of marriage and the knowledge that it is the MS that's causing this?

If I can ask, what form of MS was she DX with? My DW was finally DX with MS Dementia in 09 and knowing that DX we have been able to ( after a long battle ) get a "handle" on it and find some treatment for her.

See if you can have a neuro psych evaluation done on her and brain MRI's done.

Trust me I feel and can understand how this is affecting you. Hang in there the answer is out there "don't give up, don't ever give up" do it for the love you have for her.

[Sugarbear]

I am so sorry things have gotten so bad. I have read your posts since I joined in 2010. I will pray for you and your wife and for peace for your souls.

[Fed Up]

Trying Hard Spouse...

Something is wrong! Is her primary aware of this?
When did this severe behavior start?

It could be other things than M.S.
This type of behavior is often Opiate Addiction
Or some sort of brain tumor

Or, a clear opinion of:
"No one is more important than me" syndrome...

All of the above have interventions...and she desperately needs one! In the meantime; go save yourself, you deserve better! Hope she can be 'helped,' as only the willing can be helped. fed

[tspaulding]

My wife of 25 years then DX in 2004. Type A person, highly intelligent (4.0 MBA), etc. Couldn't take Rebif - to many side effects, allergic reaction to Copaxone, since late 2007 infused monthly with IVIG. Only uses a walking stick for balance. Slow start in the morning, some fatigue, some cognitive issues (Aricept helps).

However, in the intervening 9 years, she has tasered me, moved out of the bedroom for a year, hit me with trashcans, thrown many varied and sundry things at me, been arrested for assaulting a police officer, assaulted our grown daughter in front of our grandkids, assaulted our son for making a fire "wrong" in the fireplace, threatened to "break his bones" while he was recuperating from an operation, leapt on the church nurse's car as it was moving, asked not to come back after volunteering at over 4 different charities, asked to leave courses she's tried to take at some colleges around us. Some friends of ours are scared of her - less than 5'4", less than 120lbs.

Going on several rants lasting anywhere from 1/2 to a full hour that can be set off by saying a medicine I take has no taste or I was dropping Bible study or she felt our son did not answer her phone call with enough respect. Or a lady in her prayer group looked at her watch while my wife was talking.

Most recently, she accused me of having an affair, stealing money from her, plotting to have her "put away", "hacking" into her e-mail, monitoring her computer and filed for divorce; getting a restraining order against me after she again threw a sugar bowl at me, broke off a necklace I was wearing, ripped the shirt I had on, kicked me in the stomach and groin to the point I had to leave. She sent e-mails to my work telling them I'm stealing from them and they needed to watch out for me.

This after spending $100,000 remodeling the house, along with cruises in the Mediterranean and the Caribbean in the last 3 years.

I've had Pastors tell me to give it up, the police have said to me I need to look after myself, therapists have told me to stay away. But how do I reconcile this against now 30+ years of marriage and the knowledge that it is the MS that's causing this?

I would recommend calling a crisis worker at your human service agency, seems to me she needs to be psychiatrically admitted to hospital for help. good luck

[Trying Hard Spouse]

Personality Disorder

My wife of 25 years then DX in 2004. Type A person, highly intelligent (4.0 MBA), etc. Couldn't take Rebif - to many side effects, allergic reaction to Copaxone, since late 2007 infused monthly with IVIG. Only uses a walking stick for balance. Slow start in the morning, some fatigue, some cognitive issues (Aricept helps).

However, in the intervening 9 years, she has tasered me, moved out of the bedroom for a year, hit me with trashcans, thrown many varied and sundry things at me, been arrested for assaulting a police officer, assaulted our grown daughter in front of our grandkids, assaulted our son for making a fire "wrong" in the fireplace, threatened to "break his bones" while he was recuperating from an operation, leapt on the church nurse's car as it was moving, asked not to come back after volunteering at over 4 different charities, asked to leave courses she's tried to take at some colleges around us. Some friends of ours are scared of her - less than 5'4", less than 120lbs.

Going on several rants lasting anywhere from 1/2 to a full hour that can be set off by saying a medicine I take has no taste or I was dropping Bible study or she felt our son did not answer her phone call with enough respect. Or a lady in her prayer group looked at her watch while my wife was talking.

Most recently, she accused me of having an affair, stealing money from her, plotting to have her "put away", "hacking" into her e-mail, monitoring her computer and filed for divorce; getting a restraining order against me after she again threw a sugar bowl at me, broke off a necklace I was wearing, ripped the shirt I had on, kicked me in the stomach and groin to the point I had to leave. She sent e-mails to my work telling them I'm stealing from them and they needed to watch out for me.

This after spending $100,000 remodeling the house, along with cruises in the Mediterranean and the Caribbean in the last 3 years.

I've had Pastors tell me to give it up, the police have said to me I need to look after myself, therapists have told me to stay away. But how do I reconcile this against now 30+ years of marriage and the knowledge that it is the MS that's causing this?

[fishead]

mirey45,

It appears you are "complaining" and that IS OKAY!! You need to "vent", get these burdens off your chest. Is there a therapist you can go see? It REALLY sounds like you need one, to talk to and get all this "krap" OUT of you.

Most work places have "employee health". Call your works EAP and go see one of their therapists, to get you started.

[mirey45]

Let me tell all of you, these last 8 months have been busy to say the least. Hopefully I have time for one of the best things ever, this forum.

Moved in October to a smaller home in a senior complex, son and family moved at the same time to Phoenix for his job, Wife's family all got together for the time in 16 years, last time was when her Dad died. 38 people 4 Generations together in Chi-town at Xmas. Great for her Mom to have us all there.

Now for the best news, DW had her yearly MRI and Neuro visit within the last few weeks. Happy to report that in the 3 years of LDN 3.0 the MS has not advanced at all, no new lesions no change in the one's already there. Even the Dr. was pleased as to how well this drug is working for her.

It's been a long road, and yes it still is a long one coming but there is hope for all of us here dealing with this "monster", don't ever give up hope. If you keep looking, never quit, keep that chip on your shoulder and ALWAYS say to your self " Your not gonna win MS, your never gonna beat me down, not today tomorrow or EVER. I WILL WIN"

All of my "family" here, enjoy the coming spring, summer and all the great days we all have to look forward to.

P.S. Granddaughter turned 9 months old and celebrated it by showing her Mom & Dad how she can walk. Little "stinker"

[juju221]

God bless all the caregivers who are sometimes not given the notice they so much deserve! My MS fortunately hasn't affected my mind (yet) but the weakness in my legs has forced my husband to accept more responsibilities, as you well know. This MonSter not only has been life changing for me, but I recognize how it also is affecting him. He also never complains. When I was first dx'd I told him he "still had time to run" but he told me he wasn't going anywhere. I find myself apologizing for what he has to deal with because I know he didn't sign up for this. We've been married 30+ years and he has dealt with depression on and off over the years as well as being a recovering alcoholic for more than 20 of those years. I see him losing interest in doing some of those things we used to do together because some of them were things I would help him with but cannot any longer. It truly breaks my heart and I'm always worried that the stress of what's in store for us down the road may trigger a relapse.

I pray that the Lord gives him the strength to handle the challenges that are ahead of us, and will keep you and all the caregivers out there in my prayers as well.

Hang in there...and vent all you want out here.

[mirey45]

I just want to share this with all my "family" out here. Last night a new branch on our Family Tree arrived. Madeline Elizabeth arrived at 7:21 PM. My son and his wife plus baby are doing fine. She was 8 lbs 3 ozs.

I just wanted to post this so that all of you who feel like this "thing" is getting you down or even worse, you can beat it, get the better of it. My wife never thought the day she was DXed she would ever see this day. We dated, fell in love, got married, and fought this head on TOGETHER had 2 children and now a Granddaughter.

Hang in there all no matter what, you can do it.

[mirey45]

I would like to wish a Happy Father's day to all the men out here. Being a Dad is one of the toughest jobs any of us can do, and when you add this "monster" to the mix it can really "pile it on" no matter what side you have to face it from.

Growing up one of my "idol's" like other boys of my age was John Wayne. He always gave you the feeling to never quit no matter the odds, keep fighting. I say this to all of you remember that keep fighting, you will win.

Life is tough more so with this we all face everyday. But there are rewards, for me it's 2 wonderful children and soon a granddaughter.

[mirey45]

Just got her latest MRI report back, No change at all, this "monster" has not advanced one bit since the LDN started over 2 years ago.

Down to 7 weeks till our Granddaughter makes her arrival, her sister's and SIL's threw a shower for the parents last month which we attended in Chi-town. All the family could talk about is how "good" she's doing on this treatment, and with the cataract's removed.

In the last 3 years both of us have come a long way in fighting this. We WILL NEVER let it beat us and win. I know it's a hard fight for us all, but you can fight back. Yes you may have to "hit" bottom to get there but you can make it. If we can, anyone can do it.

Again I say to you all my "family" out here, " Don't give up, don't ever give up."

[richchaviv]

Mystery 37

I dont mean to sound insensitive but try putting your fears in Jesus hands and dont take them back. God will never leave you and remember his grace is enough. I used to be very fearful. I actually told my wife to leave me three times, the last time i thought she was going to hit me so i stop. I caught her looking at hospice home care for the day when I will need it. I know I am very lucky, but if your boyfriend doesnt care for you with your faults. especially M.S. and that one isnt our fault, he is not worth having around. so please trust me, put your fears in Jesus hands, its not easy I will be honest but he will take care of it for you. Just have faith and be thankful.

Richchaviv

[mystery37]

Such an interesting thread

Wow I am currently one that feels that I am losing my mind as well. The last 17 yrs I was a computer analyst for medical billing and have worked in hospitals and private care offices. I could compute and analyze just about anything until a couple months ago when I began slipping to the point I resigned from my position for the largest cardiology group here in Pensacola. Now on a daily basis, I forget every thing to the point that I have calendars every with dates and times spelled out on what days I have to do work. My forgetifullness causes me to due several things over and over again to ensure that I did them such as lock my car, check the doors in the house to ensure that they are locked, etc...

I also lash out verbally at my boyfriend in anger for no apparent reason. I heard somewhere that anger is derived from fear and I believe this to be true b/c most of the time when I lash out when I am scared. Most of the time I am scared that I am losing mind and wonder if he will take care of me when I do. But even if he would, I know that he can not take care of me the way that I would and even with that being said its not only him b/c if I had a care giver or ended up in the nursing home, they would not care for me like I would. It is the most intense scary feeling I believe that I have and believe me I have been in some very scary situations but this is my well being. What is life going to be like if I lose my mind or what would it be like for you to lose your mind and up to the point of losing your mind what would your deposition be like? I always try to put the shoe on the other foot and try to see things the way the person has to be seeing them and I can tell you that this is such a crazy scary thing.

Anyway you have done a great job in caring for her and should be commended for that b/c there are not many that would stick around in your situation. I know there may be a point when my boyfriend may walk and it just adds to the other fears that I already posses which just adds to my anger.

Best Wishes!

Mystery37