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Wife's RARE MS beating me down

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    Wife's RARE MS beating me down

    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.

    #2
    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.

    Comment


      #3
      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.

      Comment


        #4
        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

        Comment


          #5
          Originally posted by Sparky10
          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.

          Comment


            #6
            Originally posted by ozarkcanoer View Post
            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

            Comment


              #7
              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.....

              Comment


                #8
                A lot in common

                Oh, my goodness, as much as I'm sorry you're going through this horrendous impossible situation, I have finally found another one who has discovered that MS is far more than loss of bodily functions. As my husband's neuropsych pointed out, it's even worse when you have MS and know you're losing your mind.

                I don't know what the statistics are exactly and I've seen varying numbers but the rate of bipolar disease (or mood disorder) is about twice as high in MS patients as in the general population. I've read that in about 10% of MS patients there will ultimately be a sort've brain/mental functioning loss like Alzheimer's. Thankfully that's a small percent.

                Informally, I've learned that MS, with it's influence on the brain does somewhat predispose one to mental disorders as well as addictive behaviors. As you pointed out, it just makes sense since the brain does not function properly.

                My hubby, diagnosed 4 years ago in upper middle age, has had serious behavioral and mental problems although never hospitalized for them. Anti-depressants made things worse as did some anti-hypertensive meds (betablockers and some calcium channel blockers). He's still not under control although the the meds for mood disorders (Lamictal and Trileptal - originally developed for Epilepsy) have somewhat controlled symptoms as has a very good (for him) neuropsychologist who is fun in a way but at the same time very direct and no-nonsense. In fact, I read about a year ago or so that whenever someone is diagnosed with a mental illness they should be tested for MS.

                You're right, though, the MS Society is not any good when it comes to dealing with the mental illnesses involved with MS. I've tried to push that topic more in our community, especially for care partners who are dealing with such nerve wracking behavior and don't have a clue how to respond. I think the MS Society wants to present MS as a "clean" "nice" disease to the general public - just as something that knocks down people in the prime of their life and puts them in wheel chairs. Of course, the physical disability is a terrible effect and even more so in young and middle aged folks. But, the mental illness just doesn't seem to be something they think will be supported - or at least that's my take on it. It needs to be pushed and brought out of the closet so it can be addressed. Even my husband's neuro doesn't seem to want to talk about it.

                Meantime, if you can, look for an MS neuropsychologist who can test your wife to see what is going on. (Ask her PCP or neurologist for a neuropsych study) It would be a good idea if you could also find a psychologist or possibly a social worker who is experienced in MS and mental disorders to work with your wife ... and you too ... or someone else to work with you. There are plenty of people out there who do therapy but finding someone who is trained and educated in MS is much more challenging. I find for the most part that marriage classes just don't work well in a situation where one partner has a serious mental illness. Marriage partners in those situations need additional input.

                Take care of yourself!

                Comment


                  #9
                  This reply is to both Veganaction and HubbyMS.

                  We are a very small group and somehow because of what we have to deal with need to find a way to stick together.

                  Let me give you an example as to how I'm trying to help. I am a Pharmacy Tech (over 20 years, retired), back in March I became aware of a Trans-dermal Patch for Altz. called Exelon, I contacted the company Novartis in N.J. and spoke to a person(R Ph.) in there call center. I explained to him how this drug may give some help to MS people with cog problems pointing the closeness to what it was intended for, and asking them to conduct trials. On April 13th they sent me a letter responding to my call. April 14th the announced a clinical trial with start in Germany on this same subject. At the same time to get more support I called NMSS office in NY that deals with studies. Had to leave a message, (Friday afternoon about 2:00 pm no one in office) I explained all in the same manner as the call to Novartis They NEVER bothered to even return a call to me.

                  I guess what I'm saying is it's bad enough what this does to our loves, but some of us get this double Whammy of something that we can't see like a physical problem how do we cope without going out of our own minds. The number thrown around is that this happens in 6% of MS cases so doing the math using NMSS figures that means there about 27,000 people with this form. That's not many and it seems not enough for them to want to "help" us, this form is REALLY an orphan.

                  Learn all you can about Altz, and Parkinson's also along with MS. Somewhere in there is the answer I believe to help out our partners.

                  Just know that here you have one more in your corner in this fight. "Don't give up, don't EVER give up"

                  Comment


                    #10
                    NMSS does not know how to help with mental/emotional probs

                    Before my diagnosis, when I didn't know I have MS, my sleep doctor sent me to 3 (yes 3) different psychiatrists. Two of these doctors treated me with something close to contempt. The third doctor was incredibly nice, but I didn't think she understands the drugs very well.

                    After my diagnosis I called the NMSS for a referral to a therapist who does understand MS. But the woman I went to, just once, was nuttier than a fruitcake. She told me she knew I have MS because I slurred my words when I first called her on the phone !!!! Well I talk no differently than I ever have in my whole life. So I immediately didn't trust her.

                    I asked my neurologist for a referral to a psychiatrist. My neurologist, considered one of the best said "you don't seem depressed", LOLOLOL. Well he gave me a name and I finally get to see him next week. I am such a skeptic about psychs so I am scared silly it will just be more of the same put-down and psycho-blather. But... well ya gotta have hope !!!!!

                    Comment


                      #11
                      I am sorry

                      I can relate. I feel my MS Is affecting my mind more than anything else. I also seem to verbally attack.

                      I am so sorry,


                      Holli

                      Comment


                        #12
                        I am so sorry to hear how hard things are for you. I to have had the mental/emotional probs but I take meds for it and have to say it has help alot. Don't know if it would help your wife but look in to it. keeping you in my thoughts and prayers

                        Comment


                          #13
                          AGED TO PURFECTION

                          THERE ARE OTHER ILLNESSES THAT COME ALONG AT THIS AGE, MENOPAUSE COMES TO MIND (HA, HA), THIS TOO IS A DIBILTATING ILLNESS. HAVE YOU TAKEN YOUR WIFE TO THE GYNOCOLOGIST LATLY? IT COULD BE HORMONAL, BESIDES THE M/S. NO I HAVE FOUND THAT A GOOD BLOOD TEST CAN FIND PROBLEMS OTHER THAN M/S. HORMONES, THYROID, CHOLOSETROL, GET THEE TO A DOCTOR.
                          AND RELIZE WE ALL GO THRU "THE CHANGE" M/S OR NOT.

                          Comment


                            #14
                            even more similarities...

                            Mirey45,

                            Wow...even more similarities. I am not a pharmacy tech, but I used to work in biomedical research at Johns Hopkins...actually was there when my partner first got diagnosed, so I had a really amazing medical library to tap for my MS research.

                            I am now continuing on in engineering, but have been toying with possibly studying cognitive neuroscience because I seem to spend more days reading about the central nervous system and tangential disorders and their novel therapies than anything else. I've written to doctors, researchers, etc...it's so inspiring to hear the luck you've had contacting Novartis!

                            Have you ever seen Lorenzo's Oil? Sometimes I feel like I'm heading towards that level of intensity.

                            Thanks for giving me strength through your posts. I've been feeling really down and alone recently...your words are uplifting and empowering.

                            Comment


                              #15
                              I cannot really relate. My MS has "attacked" me physically. I can only relate in a sense. My DH of many, many, years has moderate Alzheimer's. His memory, our memories, are slowly going. His cognition is melting. Thank goodness there are medications to help. Leastwise, I hope they are helping.

                              To say that MS does not attack the brain makes me angry. After my last MRI - two years ago - I was told I have too many lesions to count. Mine has not taken away my cognition but by definition has left me paraplegic.

                              I pray for you and your partner. You both are giving it a good fight.
                              Rachael - PPMS - Feb/2003 - Follow my blog, the link is my homepage.
                              Genius is the ability to put into effect what is on your mind.
                              F. Scott Fitzgerald

                              Comment

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