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Wife's RARE MS beating me down

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    You know I don't mind all the "fighting" I have to do in dealing with this for the sake of my lovely wife, fighting with Doctors, MS itself, NMSS and all the other battles we have just to keep going against this beast.

    When one comes up that we thought was behind us returns I get p***ed off. That's having to deal with her family (I.E. Mother, sisters) and there totally ignorant opinions of MS I literally want to kill.

    My MIL is a wonderful woman, but her twin sister had to deal with this for almost 30 years, and because the Doctors told them how it was going to act 50 years ago they all think it's written in stone and that's how it will always act. Never even giving the remote chance my wife's MS could act differently.

    My wife's MS is focused mostly in her brain, and my MIL responded to a question my daughter asked her on the phone in a very rude and nasty manner that brought her to tears. My wife DOES not remember a lot of things and to try to understand what's going on in the family we sometimes have to call and ask for some clarification. I'm sick of there attitude that they are so called "experts". I suppose for my wife's sake I will let this slide again, but mark my words the "blow-up" day is getting closer and closer.

    Hang in there everyone someday we will get this thing beat.


      It's Not Easy

      just joined this site and came across your post. my sister has had ms for about 33 years now. in the past my parents always took care of her but they got old and feeble so i took over about 10 years ago. anyway - the toll it took my my sister's ability to think straight and reason has been more stressful than her not being able to walk. she lost all reasoning skills and has to be treated as though you are trying to reason with a 3 yr old. i have come across some books about cognitive skills and ms and would be happy to share with you.


        I HATE THIS even more. Just received within the last hour a call from my "baby" boy in Jonesboro, AR. He asked my opinion, he said for the last week he has noticed one of his legs is dragging and that he seems to be tripping over nothing. I told him that my side has spinal problems ( which some of us do) and to make an appointment with a neuro ASAP to get it checked. I did not have the heart to tell him what I thought it might really be.

        He said to me, " I thought that's what Mom and her MS started with.". I admitted yes that's how it started, so get it checked out.

        I don't know if I can take him having to go through this too, it would be a total "kick in the ****" and literally take everything I have left out of me.

        Sorry but I had to get this out, and all of you, my "MS" family are really the only "friends" I can turn and vent to.

        I really hate this D**N thing and what it does to people and families. So help me if this thing gets my son too, I won't rest till we can put MS down for good. I SWEAR IT


          Just to follow up, Son went to GP today. She did not like his history and the sound of things. Sent him right away for a MRI. He is scared, I can hear it in his voice, I'm worried about him.

          PLEASE everyone out here when you hit your knees tonight ask the "person" above to look down on him. It's bad enough he grew up having to watch his Mother go through this, and now for him to be looking at it.

          I swear the gloves are off, there will be nothing that will stop me from beating this for 2 of the people I love most in this world.


            Mirey45, I know it's hard for you and your son right now. I pray for your family.


              The fallacy of IQ tests

              Originally posted by mirey45 View Post

              She is seeing a new Dr. here in S. Illinois and I'm going to try to get her to see a Neuropsych over in Cape Gireadeau or Chicago, but I know I'm going to have a problem with that. the last time she went to one years ago in Chicago they did a I. Q. test on her and told her that it was between 85-100. She hit the roof claiming they were trying to claim she was an idiot, this is a woman who had to drop out of her 2nd year in college because of the DX she got. I guess I will just have to deal with that when the time comes.

              Thank you all from the bottom of my heart for your tips and support. A lot of people don't realize that MS deals it's cruel action on more then the one who is DX with it. I'm just an average guy, "working joe" so to speak, had my share of battles in my life, won some lost some. This is one fight I take personally and trust me I'm not gonna let this son of a ***** beat me or her.

              As I have said before, Fight the good fight one and all.

              Itís been a long time since Iíve been on the boards here. (My wife and I joined a few years ago but had to drop the internet service and just recently got it back) and this thread, and this post, caught my eye. Hopefuly Iíll catch up with rest of the thread once I get this off my chest.

              My darling bride was dxíd about five years ago but we can trace sx back more than twenty years, and they were mostly cognitive. I thought she might have a learning disability, and when she developed other health issues and we were trying to get disability status for her, I asked that she be tested for dyslexia. The results they told her was that she didnít have a learning disability. She had an IQ of 85, subnormal. The day that happened I came home from work to find the woman I considered my best friend and intellectual equal, in tears sobbing because she was stupid.

              My father had his IQ tested in WWII and it turned out to be 132, he was very proud of the fact that all his children (there are six of us) tested higher than he did. We all went to college and I am the only one without an advanced degree. Our children, the entire second generation of the family, test well into the superior range and most into the genius range. My wife walked into this mishmash of personalities and fit right in. It took quite some time to convince her that the test was wrong. It finally took a conversation with one of the sister-in-lawís. She asked my wife if she could follow the conversation that ďthe boysĒ were having. When my wife said yes, SIL said ďWell honey they wouldíve lost most college grads twenty minutes ago, in no way, shape or form, are you stupid.Ē

              The point of this ramble is that IQ tests donít work very well under the best of circumstances, let alone when there are cognitive problems. There used to be huge discrepancies in scores when testing kids from the inner cities and other cultures. If you arenít good with words, numbers, or just canít understand the questions due to any of the circumstances previously mentioned, you will score low on the test.

              Being the care-giver of someone with cognitive problems is extremely difficult. When my wife gets frustrated she lashes out, usually at me. Unfortunately, there are times when I fight right back, and then I feel like a real jerk. Lately the best way Iíve found to keep my temper is take care of myself as well. Exercise, taking my B-complex vitamins and talking with someone who can understand helps tremendously.

              Iíll take my soapbox and go read the rest of the thread now.



                Did not read all the posts. Long thread.

                However, although my residual symptoms are physical (fatigue, balance), my symptoms, when in a flare, tend to affect my mind much more than my body (although often, both).

                Cognitive stuff, memory stuff, but, also real mental health issues, such as manic and psychotic thoughts and behavior.

                I spend most flares in-patient at a mental health facility for 1-3 weeks.

                During flares, MS changes me into "someone I'm not". Hard on my DH and kids, too. Dh says they lose me, for awhile, each time it happens. And, never know if I'll improve or not. Always scary.

                ~ Faith
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.


                  did I say that?

                  My husband of 25 years tells me that I have begun to speak my mind.....
                  I told him that since my diagnosis...I have less tolerance for stupidity! I know that my neuro said we can become "less inhibited" due to the changes in the brain. I apologize to my husband when I snap at him for no reason. I give him permission to bring it to my attention. I certainly do not want to hurt my loved spouse. The depression and changes in the brain have certainly caused some changes in personality that are not pleasant. Thank God...we had been married for so long prior to diagnosis...or I don't know if our marriage would have been able to survive/thrive.


                    Just to keep everyone up to date, my son got his MRI results back yesterday. Negative for MS but now he is going to go through more tests to find out what's going on.

                    At least it's not what his Mother is dealing with, that's a load off all our minds.

                    Thank you all for your prayers and support, it was truly a big help knowing I have such a caring and loving "family" here on the board.

                    Stay strong everyone, together we will fight the fight against this.


                      Good to hear that, Mirey. Hope all the tests come out fine. You are the rock of your family. I will keep praying.


                        It's the time of the year when most of the world turns to thoughts of peace and love for all, and hope and plans for a better year ahead.

                        2009 for me was one of a lot of turbulence and frustration. At the end of January falling ice and snow destroyed our central A/C and phone junction box. In May our area of Southern Illinois had a RARE "inland" Hurricane causing major damage to our home. In August we were flying high thinking our son was going to be hired by the university in town, and that after 10 years away he would be coming "home" and our family would be "together" again. That got crashed by a very vindictive former boss and fell through.

                        The worst part was having to deal with DW's MS and finding out that the battle was going to be even worse then we all thought.

                        As the year winds down I feel like a boxer in the 15th round, cut-up, bloodied, beaten to a pulp looking through a swollen eye at my adversary and saying, " That's all you got, I'm still standing". This fight is not about me, it's for the people in the world I love the most, and as long as I can I will stand up and give it all I have.

                        Most of all it's for the "family" I found last year, that's all of you out here. I wish for all of you at this time peace, love and hope that 2010 gives all of us the answers and the strength to finally beat this thing down. It's the one "gift" we all want for the holiday hopefully next year we will be one step closer.

                        Happy Holiday's to all from Southern Illinois


                          Gina, I'm glad that the neuropsych did do a good job for you and made good recommendations. If possible, I would take the report to your primary care physician, your gyn, your whatever-specialty-doc and ask for recommendations and/or referrals to get what you need.

                          You did a great job of going back and re-writing the explanation. I'm not a doctor of any kind but I think that shows that with the right support and type of therapy that you could probably gain back a little at least (hopefully) of what you've lost. There are new theories now about brain damage and that it doesn't have to be totally a direct downward spiral. The brain can, and in many cases, does, rewire its self. Thankfully that happened to my hubby after his first attack which was misdiagosed as a stroke. He had palsy and had to put special foam grips on eating utensils and was unstable walking. But, back at your problem, you need a social worker or someone else who has some knowledge/training re MS to be your advocate. I'd push for it really.
                          Best to you.

                          Re reading my original post I realize it was not worded well.

                          The neuro psych did an awesome job reviewing the outcomes and was very clear on the interventions both psychotherapy, additional occupational therapy and physical therapy and medicines she felt would help.

                          The problem, shortly after she sent the report to my neuro, I lost my neuro (she left the practice), the neuro I am 'stuck' with (insurance) wouldn't even glance at the report (he considers them unnecessary) and did not write the referrals suggested.

                          To add to my frustration, my husband won't look at the report either.

                          I admire you for the great support you are to your husband.
                          Unfortunately, not all spouses are as involved (I wonder if it's a female/nurturing thing?)

                          As I mentioned, my cognitive issues are worsening and they were poor last year at the time of testing.

                          I won't tell you how long it took to write this reply including multiple proof reads =).

                          My MS is quite advanced after 21 years and I am frustrated to tears most days as even on a 'good' day when I can figure out where I need help, I've no one to ask.

                          This became quite the monologue. My apologies.

                          Best of luck and good health to you and your hubby.[/quote]


                            Mental Illness Associated with MS

                            Mama Bug and Papa Larry,

                            I would have to say that the mental illness and behavioral problems have been the biggest nightmare of all for me in dealing with an MS spouse. From everything I've read manic depression is about twice as common in the MS patient community as in the population in general but per the neuropsych, it's not found very often in men.

                            Of course, I'm married to the man with MS (diagnosed in his 50s), manic depression, cognitive problems, and mild dementia. The mental illness is unpleasant (mean spirited and sabotage among other things) but sometimes becomes very dangerous when he believes the "ghost stories" made up in his head. He has not only been suicidal but homicidal.

                            Mental health workers were not much help for many years (they misdiagnosed him as just being depressed and the antidepressants actually made him worse). He was quite the con artist with therapists and others and wasted his time going to therapy. The neuropsych he has now is definitely better - just hard to get in to see. Also, I can and have been in some contact with the neuropsych telling him what transpires.

                            When I attended a meeting for caregivers and MS patients last fall I mentioned the mental symptoms which did not go down well. That's probably because it was too sensitive for a group situation but, it NEEDS TO BE STATED IN AN OPEN FORUM THAT SOME MS PATIENTS HAVE SERIOUS AND EVEN DANGEROUS MENTAL ILLNESS. Good grief, what does it take? These issues need to be brought up and discussed. Families need to be protected and the patients need to be treated. It's about time that a psychiatrist who treats an MS patient has to have specialized training.

                            Onward and upward!


                              We need our own kind of medals for people who have fought the good fight alongside somebody who has MS. Yours would be something like a purple heart (from battle scars) combined with a shiny star for meretorious service. First of all, thanks for standing up, standing by, and standing strong. Kudos.

                              MS is such an overwhelming thing--even those of us who have it tend to slide into the belief that whatever happens--especially if it's weird--is just part of the MS. (I went to the doctor with the flu once--his response to my fever and vomiting? "Well, you do have MS.") But everything isn't MS, and I agree with the other suggestions about having your wife tested for hormone levels (ah, we just go dingy during menopause), as well as early (and treatable) forms of dementia or disease.

                              Best of luck to both of you.


                                You know in my opinion one of the biggest hurdles we have with this "problem" our loving partners have is just getting NMSS to admit or acknowledge that the brain or mental functions are more affected then they first thought years ago. Heck it wasn't until the early 90's that a Dr. in Milwaukee made a study and announced that MS can affect the brain.

                                I'm going to pass on to all that deal with this, if you don't seem to be getting any help or information to help you, try your local Alzheimer's group. In my conversations with them I have received MUCH more help and information then from NMSS. These two and Parkinson's are somehow close in what they do, and meds for one are now being used or undergoing testing on the others.

                                It's bad enough to have to stand by and see our loved ones deal with the physical burden of what this does to them, but getting a "double" dose of it affecting the mind as well it's more then a lot of strong people can bear. I have said this before and I'll say it again, I'm going to beat this thing down for my wife, family and all the others that go through this and are still "standing and fighting".

                                All of us, "Don't give up, don't ever give up"