Wife's RARE MS beating me down

[lessaleew]

Golly, gee, Mirey, I'd like to find the person from the NMSS who told you this and set him/her straight !!! The DEFINITION of MS is that it is a condition of the Central Nervous System (that is the brain and spinal cord) that is most likely an autoimmune disorder.

MY brain has about 40 lesions... a woman my age ordinarily has about 6 (due to the wear and tear of time). I have looked at my MRI and I have seen the lesions on my brain.

I think many people, even respected neurologists, believe that MS mainly affects the motor/sensory systems. I attended a lecture at Washington University by a brain researcher who made this claim. Soooooo, 80 to 90% of MSers have fatigue. This is NOT motor or sensory. People with MS can have cognitive problems and emotional problems that are due to lesions.

I am so sorry that you have been mislead about MS. And I am so sorry that your dear wife has cognitive problems.

I would encourage you to attend a "Caregivers Chat" held here at MSWORLD at 7:00 Central Time for people like you who care for a person with MS.

If there is anything any of us out here with MS can do to help support you please let us know.

ozarkcanoer

Hi
I Think I am one of the people with the cognitive problems. I am being tested but it takes time . I don;t know who I am anymore. I react so fast and angry. There doesn't seem to be any answers anymore. I think my dh is about to leave me. just too many ups and downs to handle. Sometimes it hurts and feels so hopeless not being able to be the person I want to be. I don't know how to fix it anymore. Leslee DX FEB 2009 at 53

[mirey45]

Yesterday I watched a very moving program on HBO ans I encourage all of you that are dealing with the serious mental problems of MS to keep an eye out and view it.

It is on HBO, a documentary called "the Alzheimer's Project" this one was chapter 4 Caregivers.

I urge all of my "family" out here, who have to deal with the MS where it attacks mostly the Brain and Cog rather then the body to watch it. The strength some of these "caregivers" have, and the love for there partners was so uplifting. It made my resolve to fight for my DW even harder.

Keep fighting one and all, we are not alone, together we can and will find answers to help our loved ones and ourselves.

[erikate1987]

Alone

Hi-my name is Kate. My husband was recently diagnosed with MS...I guess initially in Nov 09-but officially in Feb '10. However I might add this has been a 10 year journey. His primary symptoms are both cognitive and in his intestinal area-apparently it "freezes" and he will vomit continuously for sometimes weeks. Ironically this is how he discovered the MS-after an "attack" was so violent he ruptured his esophogus.
He is on Copaxone...I keep praying for miracles-I don't know how much more I can take. He has no short term memory, is terribly depressed-many times saying he is no good to anyone and we would all be better off if he just blew his brains out....of course I have reported this to his Neuro/phychiatrist and primary...he just tells them while he feels this way, he would never act it out. Meanwhile he continues to isolate himself, watch tv, sleep, then yell at me that he didn't get up earlier...etc. I know he is depressed, and angry at the disease.
I just feel so alone and frustrated. I love my husband, but we have no family here except out 2 school age children. He hasn't worked in 10 years-due to being sick-yet can't get disability (I make too much money-and he hasn't worked 5 of last 10 years).
I don't have time for much of a social life-there is no time for it. To go anywhere with my husband , it takes a minimum of 2 to 3 hours of preperation-(don't ask!)

Any advice? I too am TIRED! and just plum worn out. I had one friend, but I guess I asked 1 too many times for help and she thought our friendship was too one-sided. any advice would help.

thanks

[darkenergy]

first, i'm just finding this thread again after not being on the forums much recently. i was formerly veganaction (posted earlier on this thread), but i changed email accounts and can't seem to recover my old msworld account info, thus the new username. anyway, i have since started up two resources that may be of interest to people following this thread--

Facebook - Multiple Sclerosis Cognition Support Group
Blog - mscognition dot blogspot dot com

my hope with these two sites is that we can share information and resources in order to effect
more change and support one another. this thread is great, but i've met people in other forums on here and beyond, thus the desire to establish something that could be a focused and ongoing place to discuss ms-related cognition issues.

erikate1987, welcome. i can relate to much of what you have said. i'm 31 and my partner is 32. she's had ms for 10 years and has primarily severe cognitive dysfunction. it has made every part of our life challenging. i'm back in school and had such a rough time last semester with my engineering courses because i was trying to juggle helping out my partner, going to appointments, cooking, cleaning, paying bills, doing tons of homework, etc. i hardly slept and the little time i had to myself was almost toxic, since i would think about how much our situation had changed and depress myself.

i wish i could suggest something to you, but the reality is that life can be hard. finding places like this to vent/share, seeing a therapist, and taking short breaks away from anything but a focused interest of mine are all tactics i use to preserve some sanity. also, the local nmss chapter might be able to offer some support. i've gone to local support group meetings with my partner, sponsored talks/conferences, and i've gotten info about carepartner brunches. maybe these are potential resources for you as well. be sure to use msworld and perhaps the new groups i've listed. having a supportive community to turn to is a life-saver. take care.

[fishead]

darkenergy
Your last post was very nice and seemed to be unbiased. Please keep coming back and updating us, letting us help YOU too! Also, don't forget that MSWorld also has a weekly "Caregivers Chat"....Wed nights 8pm Eastern time.

[darkenergy]

thanks fishead! i forgot about the caregiver chat...i appreciate the reminder. i will have to check it out.

take care.

[mirey45]

Sorry it's been a while since I posted anything, BUSY SUMMER. DW has been taking LDN in a 3.0mg dose since March, so of course this has to be the WORST summer yet. Over 90 degrees every day it seems since the middle of May. So far not too bad, some days it's has tough to deal with it, but she is handling this year a lot better then others .

A bigger problem happened yesterday. I went to my GP for a follow up visit, a incident came up totally unexpected that is making me face my own mortality. I called my daughter after the visit and told her what's going on. I expressed to her that I was not worried and that it will be faced head on and I won't let it get me or rather all of us down. She told her Mother what happened and what I said. When I walked in the door my wife was waiting there, and held on to me harder then I ever remember her doing in our 33 years together.

She seemed more scared then she ever has felt while fighting the MS. I just started joking with her to ease the tension like I always do, but she would not buy it this time.

I'm not going to let her down, after fighting with MS for all these years, what I'm facing is just a pi**-ant problem that is not going to take me down.

Hang in there everybody, stay strong.

[Paloums410]

I hear you. Sorry for all the stuff we all have to deal with. MSers and caregivers.
Hang in there! Why?,because we have no choice. We love them.

[mirey45]

I saw a story on our local news here in S. IL last night that has my blood boiling, and I have to vent about this.

The story was about a study being released yesterday or today that says, " MS actvity alters with the seasons, The severity of MS goes up in the spring or summer. " according to US researchers.

How many of us out here both people with this and "caregivers" don't already know this. I have known this for over 30 years.

I'm sorry but sometimes I really have to question the Doctor's, researchers and even NMSS as to what the heck is going on. They spend all this time and money on a study based on MRI's in 1991-1993. In the meantime they won't even admit that MS in a small minority of people have the MS attack the brain and not the body.

Would someone please "slap" these people and say " Snap out of it"

Again sorry but I just had to vent.

Stay strong everyone.

[mirey45]

Just got through what might have been the WORST SUMMER EVER. Got to around 90 in late May and I don't think the heat broke until just after Labor Day. She made it through better then she ever had this year. The only change is that in March we started her on a treatment on LDN 3 mg a night.

Most other years it would take the AC, a fan and cooling cloth and still she would feel drained. She had one day at the Dr and just going to car, office, car, home in 110 heat indices would have had her in bed the rest of the day feeling drained not this time, she felt really good.

I'm sold on this treatment, granted it's just a small victory, but it's a victory. we will see in Nov when she goes for another MRI on her brain and hopefully there will be some inprovement on the plaque in her brain.

Keep strong all, we ARE going to beat this thing for our loved ones. Life might try to beat us down, but we are not going to let it. Keep fighting for our loved ones.

[mirey45]

Just to keep everyone updated, my wife got through the summer on her LDN better then any other summer in 34 years. It's helping somewhat physically but so far I'm not seeing any ease on the mental side. We are going to have a MRI done soon, to compare it to last years scan to see if there is more or ( I hope ) an easing of plaque, I just hope it's no worse.

When I look at the numbers of people with MS, and then start making adjustments ( only 6% with "MS Dementia", breakups and other factors ) I and others like me are really in a very small minority. Across the country there may only be 10 - 15,000 partners in our position. Add to that the "fact" that really nothing is being done now or even on the horizon to help the ones we love, at least here in the US.

I ask all of my "brothers and sisters" out here, please think about and offer some ideas as to how we can get our loved ones some help in this fight.

Thanks all for listening and caring. Keep fighting the good fight.

[mirey45]

Got an interesting call from a cousin of mine the other day. She had phoned and just missed me, so she spoke with DW. She commented to me that the conversation with my wife was one of the best she had had with her in years. DW was not struggling with her speech or thought, in there talk and seemed quite clear in her speach. She was amazed as to how much the "new" treatment was doing for her.

To which I told her that when we went to Tunica, MS last month she had gotten a little tired and was going to go back to the hotel to rest until we ran into the others in our party, who were going over to Harrah's to eat and play the slots. She seemed to get a "second" wind and was goo to go for another 3-4 hours.

She has been on LDN for about 9 months now, 3.0mg every night, and it slowly seems to be helping give me back some of my "old" wife. I hope we can keep this up, but her GP is fighting us as to "helping the Neuro" who is about 200 miles away. The GP wants us to see a Neuro down here who we have seen and will not even discuss LDN.

Oh well looks I STILL have to keep fighting for her, it never seems to ease up.

[Leola Stotts]

SOUNDS LIKE LIFE JUST ISN'T WORKING OUT GREAT FOR YOU RIGHT NOW. YOU HAVE BEEN SUCH A TROOPER. THERE IS HOPE. THERE IS THOSE SMALL AMOUNTS OF TIME WHEN THINGS WERE AS THEY WERE BEFORE. HANG ON TO THOSE TIMES. TAKE CARE OF YOU OR YOU WON'T BE ABLE TO TAKE CARE OF HER. LEARN ALL YOU CAN FROM RESPONSIBLE SOURCES. YOU MIGHT NEED TO THINK ABOUT A CARETAKER ONCE IN AWHILE SO THAT YOU CAN STAY FRESH AND FOCUSED. WE ARE HERE FOR YOU.

[rocky282]

I'm so sorry for you, but what a great hubby!!!

I have to say that my MS is greatly affecting my mind. I am only 30 and already have over 10 leasons on my brain, I am on 2 different meds to try and stop my verbal anger issues. Short of knocking me unconcious there doesn't seem to be much helping. My hubby is doing a pretty good job of dealing with me, and we are finding that when I sleep and how I sleep is playing a big part in keeping me under control.

It is best if I go to bed from 10 till 5am then go back to bed from 10am till 1pm. I know that's alot of bed, but it keeps me human. lol

It is wonderful that you can stand beside her, and whether she tells you or not I"m sure it is appriciated. Good Luck with everything in life, and remember the what if's don't always make life better.

[Alyms79]

That is a bunch of BS!! My mind was one the first things to go when my ms started in 06!!

It has caused lots of stuff in the past 5 years,mind and physical. (mostly mind)

My emotions are all messed up.. I can now cry at a drop of a hat..before i was nerves of steel!!

My memory has went way down. But as far as physical it is far less.