Wife's RARE MS beating me down

[veganaction]

Lives in Parallel....

OMG...your life sounds like mine and breaks my heart b/c my partner and I just turned 31. I can't relate to most MS things, b/c my partner's problems are almost entirely cognitive and I just don't think her case is anything close to a "typical" MS case. Most people seem to have a myriad of physical problems mixed with cog fog, but my partner is losing her identity, her mind, everything that makes her her,...the way someone with Alzheimer's would.

It's beyond painful to watch. I feel like I just can't go on like this, but then I can't live without her....it's maddening and sad...and terribly cruel. I would do anything for my partner, but some days I look into her eyes and I don't know if I still see her at all....how does one cope with that? That's the only thing I ever feared happening.....

[mirey45]

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

Thanks Ozark as I said way back then that was the way MS was lead to act back in 1976. Her Neuro was no "quack" he was at the time one of the leading MS experts in Chicago. They just had not found all the evidence yet as to what this ******* could do. I have been to the caregiver chat a few times, the problem is that there are not that many "givers" who are facing it in this form, so not many people I can compare notes with.

thanks for your concern, really but this is one fight I really have to deal with pretty much by my self, kind of like going to a "gunfight" and bringing a "club" LOL

[mirey45]

Your courage and attitude is to be admired, mirey! You are welcome to come here anytime and get things off your mind. We may even learn from one another.

I'm sorry you aren't getting help from the NMSS. Perhaps there was a misunderstanding all those years ago. MS certainly does attack the brain. Now, an MRI of the brain is one of the most used diagnostic tools.

Thanks Sparky as I said it was 20 years ago before a Dr. in Milwaukee "discovered" it does attack the brain.

What bothered me at the time was ANY HS science student could figure out that the brain could be attacked. MS attacks the nerve cells, that's what the WHOLE brain is made up of therefore at some point it will attack the brain. DUH

My problem and I have found a LOT of people have the same feeling NMMS acts like we "givers" don't know anything, we are not "medical" professionals. No we only live and see what it does 24/7.

[ozarkcanoer]

WHO said MS does not attack the brain !!!!!!!!

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

[Nicole77NYC]

I've seen people run away from much less stressful relationships than what is happening to you. You are a good man for sticking it out and making your lives all you could. I've never seen that before.

I couldn't get a man to sneeze on me nevermind building a life together.

Hold on to what you know, which is what you've made your life to be. Illness makes us accept changes but ultimately how we handle it speaks to who we are.

Sometimes all you can do is hang on until the scenery changes.

[Cinnamon Bear]

I am so sorry you are going thru a tough time, I hope things get better. This stuff is the pits, as you already know. I will keep you in my prayers.

[mirey45]

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.