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    #76
    I understand..

    I understand. No matter how much patience, love and support you pour in, the ravages of MS eat it up, leaving a hole of emptiness. Dealing with my best friend's MS has been harder, more emotionally draining on me than my own father's admittance to a nursing facility. The damage it does to personalty has been under-rated in my opinion and we all suffer for it. I miss the closeness we used to have. Now I am the object of jealousy as she can barely walk, and needs a walker. I have felt nothing but compassion for her., but she seems to be lashing out at me as a door mat.

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      #77
      I was just browsing the NMSS web page and clicked on some of the mental health articles. Frankly I found them insipid. Yes, of course, someone with a serious disease is depressed. But that doesn't account for the extremes of behavior that the articles barely acknowledge. When those extremes are acknowledged NMSS always makes the politically correct statement that the patient might need psychiatric meds and therapy. Duh.

      Why aren't they supporting research about these malfunctioning brains and personalities as much as they are drug therapies that fail in 50% of people with MS anyway? And, why don't they note that most of the psychiatric drugs are going to have a different effect on MS patients - in some cases worsening their symptoms? (Trileptal is one - Lamicatal has been found to increase brain lesions) Why haven't they acknowledged that MS is really a collection of diseases, not just one? Why do they put most of their energy into fund raising and provide so very little to the support of the Care Partners and the mental aspects? Listening to or reading the same few trite articles doesn't help.

      Of course I would rather take my husband to receive psychiatric med treatment (although in the back of my mind I'm always wondering if it's making him worse in the long run or even in the short run) and I definitely encourage him to go to therapy. But, for 6 years therapy didn't help a darned bit. Not one therapist recognized that he is bipolar and had MS. He has one now who specializes in MS and that's good but I don't think this will ever be a "normal" or comfortable life that I have with him.

      NMSS, start listening to those of us who REALLY know what it's like to live with a raving maniac who is at times suicidal despite medical care. We, the Care Partners would like to have a life too. Get with the program and start some serious suports and interventions for us. You're pulling in the money; now use it where it belongs.

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        #78
        Originally posted by HubbyMS View Post
        I was just browsing the NMSS web page and clicked on some of the mental health articles. Frankly I found them insipid. Yes, of course, someone with a serious disease is depressed. But that doesn't account for the extremes of behavior that the articles barely acknowledge. When those extremes are acknowledged NMSS always makes the politically correct statement that the patient might need psychiatric meds and therapy. Duh.

        Why aren't they supporting research about these malfunctioning brains and personalities as much as they are drug therapies that fail in 50% of people with MS anyway? And, why don't they note that most of the psychiatric drugs are going to have a different effect on MS patients - in some cases worsening their symptoms? (Trileptal is one - Lamicatal has been found to increase brain lesions) Why haven't they acknowledged that MS is really a collection of diseases, not just one? Why do they put most of their energy into fund raising and provide so very little to the support of the Care Partners and the mental aspects? Listening to or reading the same few trite articles doesn't help.

        Of course I would rather take my husband to receive psychiatric med treatment (although in the back of my mind I'm always wondering if it's making him worse in the long run or even in the short run) and I definitely encourage him to go to therapy. But, for 6 years therapy didn't help a darned bit. Not one therapist recognized that he is bipolar and had MS. He has one now who specializes in MS and that's good but I don't think this will ever be a "normal" or comfortable life that I have with him.

        NMSS, start listening to those of us who REALLY know what it's like to live with a raving maniac who is at times suicidal despite medical care. We, the Care Partners would like to have a life too. Get with the program and start some serious suports and interventions for us. You're pulling in the money; now use it where it belongs.
        HubbyMS I have been asking these questions since this first was noticed in 1989. My wife is going tomorrow morning for testing on her mind. NMSS had NOTHING to do with helping me find the Dr. or set up appointment, It was done by the state and local Altz group. They seem to be MUCH more behind me even though it's not what she has.

        She has been getting so much worse these last few months, I'm starting to fear for what the future is going to hold, both for her and our family.

        My wife's loss of hearing, sight, memory and "common sense" no matter how you spin it is NOT caused by depression. There's an old saying, "If your not part of the solution, then your part of the problem.". NMSS is part of the problem.

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          #79
          We went this last Thursday and FINALLY got a good NeuroPsych done on my loving wife. Just 2 problems with it, doctor was great, much better then we expected. talked about the MS and it's course after word and she is in agreement that giving LDN a try would not be a bad way to go, so things could be looking up in that regard.

          First concern, while she was going through the test it seemed that there is much more damage then I thought, that bothers me. I never saw as much as I did the other day seeing her react the way she did and how her thought process has started to fail her.

          Second before she went to bed, my daughter looked in on her and found her crying. She told her, " I never wanted your father or you children to ever have to deal with MS like this".She's always been strong about her MS, and I really hope this is not going to send her into depression. After 34 years with this and her keeping such a positive outlook, it would be an injustice to have her go into a downward spiral at this point.

          It may seem like a couple of "low" blows, but it didn't knock us down to the "canvas", we still have a lot of fight left in these "middle" aged souls.

          Now it's on to Springfield next month new Neuro, and hopefully we can come away from that visit with some "new" weapons to beat this down.

          To all of you I share the words we live every day by, "Don't give up, don't ever give up"

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            #80
            Neuropsychological impairment early indication of MS

            Mirey, let us know, if you're comfortable with it, what you find out.

            Medscape had an interesting article Jan. 29th mentioning that neuropsychological impairment is an important early indicator of multiple sclerosis. That's very interesting because it departs from the traditional view that MS is only a disease of mobility. The doctor said that cognitive impairment is quite common in all stages of MS.

            The neuropsychological testing for MS has to be different than neuropsych testing for a stroke or Alzheimer's as there are other very specialized areas that they check. I've read that in the early stages of MS a person might seem cognitively normal unless these specialized tests are run. My husband probably fits that description as we suspect he's had it since high school. They indicate things are not normal. Of course, the disease progresses from there; faster in some people than in others.

            I'm still amazed that the drug companies are behind-the-times on all this. All their drugs are touted for mobility. I guess they must have been hand-in-hand with the MS Society. On the other hand, mental functioning issues just don't have the appeal since they affect the very core of communication and personality.

            I attended a regional MS Chapter meeting in late January where a neurologist from a prominent med school talked about the new oral MS drugs. But, there was never any mention of COGNITIVE "lack of mobility" (which it is in a sense).

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              #81
              HubbyMS, I will type the Dr. report next week for you and everyone else to read. Right now I just want to get through this trip Monday and Tuesday, and see what all of our options ( if any ) are.

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                #82
                Originally posted by veganaction View Post
                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.
                Funny, you said what you said, because YOUR words were uplifting and empowering to ME.
                Live simply. Love generously. Care deeply. Speak kindly.

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                  #83
                  Cognitive stuff

                  Cognitive problems are not a problem to Drs. and pharmacutical companies. You can't make money by curing a disease.(my opinion) only treating it. They always say depression,or try to put you in a nice little labeled mental box. They just don't get the statement that MS is personal. "It affects different people in different ways, and the same person differently on different days." We know the people we love and care for better than anyone.
                  Hang in there with the rest of us(my dh ms dx in 88)He has both physical and cognitive problems.
                  Try to remember it's all perception to people who do not have disabilities or a disease (including Drs.) If you don't look sick or disabled then most people think you're just fine.
                  Hope to see you in caregivers chat room tonite.
                  HAVE A GOOD ONE

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                    #84
                    Went to the Springfield Clinic here in Illinois on Monday. DW saw a really great Doctor there Tues. morning. Very patient, professional and very easy going in wanting to work with her for treatment of the MS.

                    She has had it 34 years now and his feeling was "If you want to get on some medication for the MS fine if not your doing so well now and have had it for so long that if you don't that's fine too."

                    We discussed LDN for her, he said that he saw nothing wrong with trying it. He said he had 10 other patients doing it and they are all doing well on it. He agreed that the relief we were seeking, ( sleep, bladder, and brain functions) could be helped by LDN and he was happy to let us try it. Gave us a scrip for 3.0 ( that's all he writes for, feels that dose gives the best chance. )

                    Got it and sent it off the next day to Skip's in FL for filling, now just waiting to get her started on it.

                    I also yesterday found the research article from a study done by Dr. Bruce Cree of UCSF on LDN. Bottom line of the article is "LDN significantly improved mental health quality of life indices. Further studies with LDN in MS are warranted".

                    To me this seems like a real positive step to help all of us dealing with the level of MS that affects the mind more then the physical. We will see only time will tell.

                    Until then all of us need to stay strong and hang in there.

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                      #85
                      Thanks, Mirey

                      I have been reading this thread since its beginning, and believe it contains the best responses and support that I have seen on these boards.

                      Your patient, determined model of support for your wife warms us all ... I, too, am blessed with a husband who will stay the course, doing the shots that i can't reach or stay steady with, reminding me of things without chastisement, and encouraging me to do what I love (teach and write), and not focus on what I can no longer do comfortably (knitting, painting, driving in the dark hours.)

                      I am still working, but he holds down the fort on everything else at home (and that is considerable.) I have partners at school who are aware of my diagnosis and support me when things become more than I can deal with alone. I have only a few more years left, and with their support and kind friendship, and my husband handling everything else at home to allow me to maximize my energy for school, I will make it, and retire safely with a pension and health insurance. It is hard, but I am not alone. Bless him, and them, and you.
                      First symptoms: 1970s Dx 6/07 Copaxone 7/07 DMD Free 10/11
                      Ignorance was bliss ... I regret knowing.

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                        #86
                        HubbyMS, here is the report that was sent to my wife's primary care Dr. I hope it helps you or anyone else on our board.

                        " I evaluated M B R in the Memory and Aging Clinic on 1/21/10. The evaluation is enclosed. To summarize, she is a 55 year old female with a long history of Multiple Sclerosis who has more recently been having memory and other cognitive problems, She and her husband were wondering if this was from the MS or from another problemsuch as stroke or Alzheimer's.

                        On exam her speach was halting. She scored 22/30 on the MMSE, (Mini-Mental State Exam). She was unable to draw interescting pentagons or a clock. Her vision is poor, but it seemed to be more of a Cognitive Issue. Howevershe had no trouble with word finding (naming animals). Her physical exam showed neurologic changes consistent with her MS.

                        After review of the literature, I feelthat her cognitive problems are most likely secondary to her Multiple Sclerosis. Only 5-6% of patients with MS develop cognitive dysfunction, but the discription of the abnormalities seem to fit her pattern. There is probably a less then 10% chance that this is early Alzheimer's disease. interestingly there has been a study using donazepil in patients with MS dementia and there was modest benefit. This may be worth trying. She has an appointment with a neurologist in Springfield for another opinion on treatment for her MS. She is mainly interested in trying naltrexone. If this doesn't help, then consideration could be given to trying Aricept."

                        I just want to add 2 things, one this Dr. was suggested to me by the local chapter of the Alzheimer Asst. NMSS was and as far as I know is still useless in helping those of us who have to deal with form of it. Two, The final conclusion of the study done by Dr. Bruce Cree at UCSF, in which he gave in a double-masked, plecebo-controlled 8 week study using 4.5mg nightly naltrexone over an Eight week period.

                        "LDN significantly improved mental health quality of life indices. Further studies with LDN are warranted."

                        This looks promising to me. I have had DW on it for a week but only the 3.0mg dose. Given the timing from Dr. Cree's study if it helps then we should see something at about 12-16 weeks.

                        I hope this information helps anyone of my MS "family". The answer's are out there we just have to find them ourselves and get someone to listen, until then remember,

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

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                          #87
                          One more thing, upon looking at her latest Brain MRI, I found a couple interesting points I would like to share and see if others might have seen them.

                          " The lateral ventricals are disproportionally large in comparison to the size of the cerebral sulci." and " A 6 x 4 mm, T2W bright, T1w dark focus in the right frontal corona radiata may be an old infarct vs MS plaque.".

                          I know a lot of "jargon" but this has me stumped. Trying to research it or get Dr. to translate for me( lot's of luck). If anyone out here can help I would really welcome the comments.

                          Thanks one and all.

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                            #88
                            While I agree there are people who misuse ms (or anything else) as an excuse to behave badly your remark below troubles me. It is like saying a person's Alzheimer's is problematic for others and they better learn to remember at least what others consider important. At the grocery store the other day my gf asked me six times which kind of pizza was better and I didn't even know she was talking to me. I asked her why she didn't poke me or something and she said she did and I didn't notice that either. Telling me I should change wouldn't help a thing, I surely would if I could. I don't mean to judge what you said because I don't know specifically what you're referring to and in your context what you said may be entirely appropriate and you have my sympathies and appreciation in any event.

                            Originally posted by HubbyMS View Post
                            I think that one of the points/issues that needs to be considered "is it ok for the MS patient to ruin my quality of life because he has MS?" I would say not. He needs to learn to control at least a portion of his behavior.

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                              #89
                              i think its dh's cognitive problems, 'cog fog,' forgetfulness, lack of awareness that someone is talking to him, not understanding what is said to him that are more painful than physical problems. its like i'm losing a piece of him if i lose his mind... physical isn't nearly as important when i compare.

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                                #90
                                mirey45.. reading this thread has been as heartwarming as it has been heartbreaking. Your dedication and commitment to your wife brings some peace to my mind regarding what lies ahead for my dh, he too is a very , kind , loving, dedicated man and it breaks my heart that MS will be such a burden on his life. a couple years ago during a bad MS flare, I desperately tried talking him into leaving and getting on with his life. He told me I was his life and made me promise to never try to get rid of him again. of course , I still feel guilty and I am certain at times he wonders to himself how he will deal with the MS when it goes from bad to worse. but we aren't giving up !

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