Wife's RARE MS beating me down

[mirey45]

New Dr. in Evanston, saw us last month and was more then willing to continue LDN, in fact he brought up raising the dose to 4.5mg. Going to start that next month. He wanted a new MRI on her Brain to compare effects Pre & Post LDN. Had that done yesterday both with and without "dye". Should get reports back in a week or two. Hope there is improvement.

Going to fight this with her for as long as I can. All of you remember your partner is the most special person in your life. Stand with them, fight as hard as you can for them, love them.

[mirey45]

I wanted you to know that I just read a book called Google
LDN by Joseph Wouk. His diagnosis and struggle with his
diagnosis of a rare form of Progressive Relapsing MS, subcortical dementia. He explains how a relatively unknown drug LDN (low dose naltrexone) has completely
rewired his brain. Please watch the video titled Google LDN.
I felt compelled to tell you after reading your post. I felt I needed to fine out all I can about LDN. I have been taking it
successfully for two years. Best Wishes..........

Kitkat59 I "spoke" with Mr. Wouk here on line and he was the one who convinced me about trying this for my DW. I really felt in her case we had nothing to lose, seeing as how NONE of the other "treatments" would have helped.

It would be a "big" help if the FDA would approve it's use for MS then more Doctors might write for it. Alas it comes down to money not really what's best for the people that have to deal with this.

My wife's mind is coming back some, and to me and our family it's been nothing short of a miracle. Even her next sister, who ALWAYS gives us grief about the treatments we have tried in the past, admitted that this is helping.

Stay with it as long as it's helping. lots of pluses very few (if any) down sides.

MS may take our body, our minds it can NEVER take our heart, soul or our fighting spirit.

[kitkat59]

Google LDN

I wanted you to know that I just read a book called Google
LDN by Joseph Wouk. His diagnosis and struggle with his
diagnosis of a rare form of Progressive Relapsing MS, subcortical dementia. He explains how a relatively unknown drug LDN (low dose naltrexone) has completely
rewired his brain. Please watch the video titled Google LDN.
I felt compelled to tell you after reading your post. I felt I needed to fine out all I can about LDN. I have been taking it
successfully for two years. Best Wishes..........

[MRIVIERA]

[QUOTE=mirey45;1167675]Having just passed my 57th b-day I am really feeling tired and beat down from dealing with this d**n thing that has my wife. She was DX in Jan 1976 before we started dating and in a few days we will be married 32 years. Before we got married we sat down with Dr. and had the "talk" about what to expect, so I never went into this blind, kind of like a fireman going in while others ran "out" (away). We had 2 children, I worked hard, took care of her was both mother and father to our kids making up for what she could not do, never ONCE complained.

In 89 I noticed her MS was doing something to her we did not expect. Physically she was doing good, no wheelchair, walker once in a while when she was weak or her right leg dragged, some loss of bladder, all in all a lot better then others of her age or length of time with it. Her MS was affecting her mind more then what we were told the cog damage might be. When I asked around about others in her family with MS (5) none of them had the problems that she had. Her Mother got so mad at me she didn't talk to me for months, which hurt because I really love my MIL.

Contacted NMMS about this and was told in no uncertain terms "I was crazy" MS DOES NOT attack the brain. RIGHT now 20 years later she has been re-diagnosed as being one of the 6% where it goes to the mind more then to the body. Still coping though, still fighting along side her to beat this thing. Trying very hard to deal with all her new little quirks, her not understanding when someone says anything to her, but the way she verbally attacked me last night and my ulcer reaction this morning really is starting to make my mind play "what if".

NMSS is NO HELP, family too far away and twice as useless as NMSS. I have given up a lot for her and our children, never once complained did it willingly for the "good of the team".

I got involved with this forum a few months ago, and even though I don't know any of you personally, trust me this is the first place I have found some kind of peace and friendship in dealing with this. I'm not looking for anything I just needed to vent and get some of this out.

Thanks
Fight the good fight one and all.

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[mirey45]

Sorry I have not kept up, last 2 months have been hectic to say the least.

We could not find a way back to Springfield for a follow up appt. with Dr. that prescribed her LDN, at least not one that would have not cost a small fortune.

Contacted her "old" Neuro in Evanston, he is a Professor of Neuro at a Med School up there. Was very surprised that he is in favor of LDN treatment, thinks it should be one of the first things tried, that according to him the "Jury is still out" on the major MS drugs. He hooked us up with an associate in his practice.

Saw him in Chi-town last week, very professional, had no problem keeping her on it, even suggested we think about going to a stronger dosage.

She had a little "backslide" when it really got cold, but all in all getting some of her back.

I guess what I'm saying is because she means so much to me I will fight till I can't, and then fight some more just to keep this "monster" from doing it's worst. Hang in there everybody, together MS don't stand a chance against all of us and our will to win.

[mirey45]

Just to keep everyone updated, DW is doing much better mentally since the LDN was started almost a year ago, and so am I.

Last year at christmas I really had thoughts of her having to go into a nursing home it was that bad on all of us, what a difference a year can do.

She will never totally be back to what she was when we married, but having her back just a little is something my children and I can live with.

Peace to all my "family" here may 2011 be a good year for everyone having to deal with this "monster" in there lives.

Remember " Don't give up, don't ever give up ".

[mirey45]

Just wanted to take a moment to wish all my "family" out here a safe and happy holiday season. I hope 2011 is good for all of you.

We can all hope this year, we can get one step closer to beating this "monster" we all deal with.

[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.

[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.

[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.

[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.

[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]

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]

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.

[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.