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Wife's RARE MS beating me down

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    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.

    Comment


      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 ".

      Comment


        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.

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          [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.

          [/QHave you considered the stem cell procedure in Israel, Panama or Costa Rica? You will find info pm thos website. Total cost is around $35,000 including travel expenses.

          Comment


            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..........

            Comment


              Originally posted by kitkat59 View Post
              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.

              Comment


                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.

                Comment


                  Originally posted by mirey45 View Post
                  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.
                  Your wife is a very fortunate woman to have such a kind, compassionate man as her husband & life partner. You sound like you are a REAL Prince Charming to your Princess!
                  DX 10/2008
                  Beta Babe 12/2008-07/2013
                  Tecfidera 07/2013-01/2018
                  Aubagio 01/18-09/20

                  Ocrevus 09/20-present

                  Comment


                    Definitely can relate to Mirey & VeganAction

                    I happened to stumble across this forum about 6 hours ago and have not been able to stop reading since i began. It was not until reading this thread did i feel a deep connection. My sister (26) was diagnosed about 6 years ago. She was dx a couple of months after giving birth to her 1st child and after that everything happened so quickly. It was like overnight she completely lost her memory and all the other "typical" symptoms surfaced. Before this my sister was outgoing and lively with a attitude that was not for the weak. its like her brain has made a complete 180. She's child-like now. She's mellow most of the time although her fierce attitude does make an appearance at times. its like shes been replaced by someone else. It so sad to witness happen and i would give anything to have my "old" sister back. Along with ms her dr diagnosed her with short term memory loss and looking back i remember wondering with my family why was my sister affected in such a harsh way. other MSers seemed to only have physical symptoms, etc. But we hadnt heard of any other case that was like hers whose memory was no longer there. a little comforting to know that she is not the only one.

                    Comment


                      In one of the posts, someone mentioned the song 'It is Well With My Soul' and how that song was hurtful to them as they were dealing with MS. I think their words were that it felt like a slap in the face.

                      I'm sorry you felt this way. I know that an MS diagnosis brings all kinds of emotions and all of the 'unknowns' of a diagnosis like this are indeed difficult.

                      But I want to encourage you as well by telling you about the song you were wounded by. The man who wrote this song, Horatio Spafford, knew the struggle of hard circumstances. He tragically lost a son. And then when his family was sailing to Europe, he lost four of his daughters when their ship was in an accident. He wrote this song at the very place in the Atlantic where his daughters' had died.

                      When peace like a river attendeth my way, when sorrows like sea billows roll. Whatever my lot, Thou hast taught me to say it is well, it is well with my soul.

                      This man was not speaking in simple platitudes. He wasn't just throwing out pie in the sky good feelings and thoughts. This man was writing about what he had experienced and knew to be true. He had buried four daughters in the Atlantic ocean, a grievous event, but his grief and sorry led him to cry out to God and in his cry, he was given comfort from the Lord. He learned that even in the midst of great personal loss, all was truly well with his soul. The Lord was caring for him and giving him peace. That is a message we need to hear. It is not a slap in the face, my friend. It is an encouragement to cry out to the Lord who loves you and cares about what you are going through. He hears your cries and will answer.

                      He has heard my cries. And He has lovingly cared for me as I have lived with MS for the past 27 years. I pray you cry out to the One who loves you! He wants you to know what the writer of this song came to know. . . the peace that only He can give. Living in His love all is well. Bless you.

                      Comment


                        Since I can't edit, I will post a correction.

                        In my previous post, I accidentally typed [but his grief and sorry led him]. The word [sorry] should read sorrow.

                        I am sorry for my mistake.

                        Comment


                          I'm sorry that I am not keeping up out here like I should. The progress my DW is having with her LDN treatment is going so well we seem to be "on the go" a lot more then the last 20 years.

                          Had to go back to Chi-town for a sad moment for the both of us. Her Uncle Bill passed in May. Bill was a special person to us both, but in my case even more so. He was married to my MIL's twin sister who also had this "monster" until she left all of us in 89. Bill was a "mentor" for me, always there to help, support and advise whenever I asked, even after his wife's passing. We shared a bond being the only partners in the family going through this, I could always count on him.

                          When I first met them, I could see that they were concerned about their niece and her future. They soon after felt everything was going to be alright, she was with someone who was NEVER going to let this get the best of her, someone who would fight with everything he had for her and loved her deeply. I thank him for all that he did for me and made this life I have a little easier.

                          I also had to undergo 2 eye surgeries in the last 4 weeks, cataracts. No problem very easy, but seeing my wife come in after the first one when I could see a lot better, and seeing the big smile on her face reminded me just how much I love her and just how lucky I am to have her.

                          Hang in there everyone, it's not as hard as it seems, life with the one you truly love is worth it no matter what you have to face.

                          Comment


                            I have not been writing as much as I should, (BAD COMPUTER, TOO OLD) but I have been reading and now that I have a new Comp I can get back to my second love, this forum.

                            I have noticed a lot of "new" people writing here on the forum about their life and the struggles they are having with this "thing" we all face everyday.

                            Dealing with this from one side or the other seems like an eternal battle. It's rough, one of the toughest things any of us will ever face, but you can get through it. Heck 2 years ago when I started this posting I had hit bottom after fighting it for 34 years, and seeing what it was doing to my love, the person I decided to share my life with, my DW. Her MS was making her mind so bad my children and I wondered if it was time for her to be put in a nursing home, that's how bad the MS Dementia had gotten. I got it out on here, and then after getting it all off my chest took on the fight again, finding a treatment that helped her and gave us back each other.

                            To the people with MS, your not alone remember it hits not only you, but your partner, children family and friends. It's very hard for a partner to dream, and plan for your future together and see it all crumble around us, we react and most times we hurt the one that means the most to us.

                            To the partners, the one thing that gets forgotton most in our anger is why we decided to spend our life with this person. We love them more then ANYONE ELSE in this world, just because they got this did not change them or why we love them. NEVER FORGET THAT!!

                            My family over the years have found three quotes that we live everyday by,
                            " It ain"t about how hard you can hit, It's about how hard you can get hit and keep moving forward, how much you can take and keep moving forward"

                            " MS can take my body, it can take my mind, IT CAN NOT take my heart, my soul, my spirit or the love I have for that one special person"

                            " Don't give up, Don"t ever give up"

                            You can do it you can survive this "monster", your not ALONE. Out here you have a large and loving "family" brothers and sisters willing to share listen and support any way we can. There is always an answer, always a way, and we are here for you.

                            Stay strong all of us.

                            Comment


                              Thank you for the encouragement Mirey!

                              Glad to hear your DW is doing better - she's lucky to have you in her life and I think you are equally blessed with her!
                              DX 10/2008
                              Beta Babe 12/2008-07/2013
                              Tecfidera 07/2013-01/2018
                              Aubagio 01/18-09/20

                              Ocrevus 09/20-present

                              Comment


                                Happy for you and DW.
                                Thanks for the pep talk.
                                Your DW is at least willing to try something.
                                HAVE A GOOD ONE

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