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  • #16
    Welcome Knights wife, my husband is 44, feel free to ask away, we are here to help or at least understand.
    Lisa

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    • #17
      First onset was the Summer of 1981. I have secondary progressive. Not taking any meds, except Vitamin D, 1000 IU's. I took Betaseron for 9 years. Wheelchair now for approx 15 years. I am retired.

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      • #18
        New and curious

        I do-am new- just discovered this site, which is ironically in my own neighborhood central NJ. Have had symptoms since childhood but never suspected MS until I suddenly went lame - had work up, MRI & diagnosed in '86. Worked FT (as RN) until '02, w/ severe MS exacerbation. now secondary progressive, use WC (bad falls). I was looking for information on SP tubes- have had one for a year now, & this site had most on this & other issues. I would like to hear from others in this area about where they go for MS treatment & if they have recommendations. Where is the most appropriate place to do that? Forum or private message? many thanks.

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        • #19
          Hello and welcome to the forum. As you have discovered, there is a wealth of information shared here. I'm sure you'll get some very good tips about treatment options where you live.
          MS with cervical and thoracic cord lesions

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          • #20
            Wheelz why did you quit taking the Beteseron? My husband has taken it since day one which is almost 5 years now.

            CBK, you can ask whatever you want here or send me a private message, my husband has had a suprapubic cath now for about 3 years. I will try to help in any way I can.

            We are located in Illinois and don't really have a MS specialist, David sees a nuerologist here locally but I don't recommend him. I mean he's good but alot of things I tell him he has never heard of..such as the Ampyra. We did at first go to Barnes Jewish Hospital in St. Louis, MO and they are good, Dr. Naismith is who he seen there, but with no new problems we haven't been back in over two years, just can't seem to find the time or energy or money to make the 3 hour drive one way.

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            • #21
              My husband stopped taking his disease-modifier a long time ago. He then tried the chemo drug one, and didn't like it. Then went back on the Avonex after this most recent decline and I noticed it had a really bad effect on him, so we stopped it again. I like his neuro, but we are always the ones bringing new info to him. Well, ok, they did offer him into the Tysabri trials (but he didn't do it).
              He takes Baclofen at night for the spasms, and LDN because it might help and can't hurt. Fish oil, Vit. d, calcium, Vit E.

              And he also developed frozen shoulder about 5 or 6 mos ago, so we are trying to work around that as well.
              Rebecca
              Wife and Caregiver, husband has Secondary Progressive MS, wheelchair bound, unable to work, MS still progressing.
              Mother of 2 active boys!

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              • #22
                Hi all!

                I haven't been on here for a few months. Went to an all MS site because I felt that there was little support for me and felt guilty taking up space with my issues when others had more severe issues. Anyway, I have had MS for 15 years, went from RRMS to SPMS about 6 years ago am in a wheelchair since then. Now experiencing rigid spasticity from the chest down. Am scared being paralyzed and having the spasticity worsen each week.
                "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

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                • #23
                  Hi all!

                  I haven't been on here for a few months. Went to an all MS site because I felt that there was little support for me and felt guilty taking up space with my issues when others had more severe issues. Anyway, I have had MS for 15 years, went from RRMS to SPMS about 6 years ago am in a wheelchair since then. Now experiencing rigid spasticity from the chest down. Am scared being paralyzed and having the spasticity worsen each week.
                  "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

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                  • #24
                    Hi Snuz. I know what you mean about the rigidity, the fear and the worsening spasticity - we aim to preserve what we have, knowing that inevitably more of the territory will be ceded. It's great that you've returned to the forum. What I've discovered is that SCI, whether traumatic or disease-related, ends up in the same place: disability along a broad spectrum. And this community seems to be more focused on what we all have in common, than the differences in what brought us here. Best wishes to you.
                    MS with cervical and thoracic cord lesions

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                    • #25
                      Hi Snuz, I remember talking to you in the past. Glad to see you made your way back here but sorry to hear things are getting worse for you. Do you take anything for the spasticty? David is taking two baclofen tablets a day and so far that seems to help, but there are still days that it is worse than others. Exercise really helps too. He uses a Nustep, standing frame and a motomed.

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                      • #26
                        Hi,

                        This past year has been really hard. I'm glad to be back too, thanks! Let's keep an MS thread always, it's so nice to have a specific place to talk to MSers, not that I don't enjoy the entire sight, I do.

                        As far as the rigidity...I hate it! It is so hard to get comfortable! I have to lay "stick straight" on my back or lay on my left side and my right leg lays down behind my left...it strains my low back and makes it ache. I take 20mg of Baclofen 3X a day, 300mg 3X a day of gabapentin the last at about 10:00 and I take 2 Tylenol PM and lay 1 more and a 10mg Baclofen on my bedside table for when I wake up at 4:00 AM every morning! I seem to get more and more rigid and dead feeling up to my chest now. What meds do y'all take for rigidity? Have you tried Tizanidine sp? If so did it work?
                        "What has happened, has happened; What I am going through, I shall rise above; And what will come, I will meet with courage"~Hazrat Inayat Kahn

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                        • #27
                          Hi Snuz. I don't take any meds for the rigidity and spasticity at this point - I just put up with it, as side effects worry me. But I think it's wonderful that the meds are there and I know that many, many people are helped by them.

                          It sounds like you might need to make some adjustments in your meds - have you discussed the increasing rigidity and feelings of deadness with your doctor? Maybe a "tweak" to your schedule would help, or a trial on a different med. I don't know anything specific about Tizanidine.

                          I second the idea of keeping up a lively MS discussion! It's absolutely liberating to be able to talk to others who live with this disease in any capacity.
                          MS with cervical and thoracic cord lesions

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                          • #28
                            I was wrong Tizandine is actually what David is taking he takes 1 4mg tablet at 9 a.m. and another at 9 p.m. He also takes Lyrica which is suppossed to help with the nerve pain but I have backed him off of those before because I thought it was causing other problems only to have him become much more rigid. I guess the pain could cause rigity (sp) Anyway the tizanidene seems to help alot. The baclofen constipated him. The wanted to do Botox injections in his left arm due to the tone but we haven't went that far yet. We are just trying to work on it with exercise.

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                            • #29
                              Ms people with sp cath's

                              i have had ms for 11 yrars and i have sp cath i am in pain.

                              you?

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                              • #30
                                Susan, why the pain? From the suprapubic cath? Please tell us more. David has had MS since 2005 and also a sp cath, the pain he once had was from nerve pain, he takes Lyrica for that and it has really helped. The cath has been the best thing for him too, now I don't have to worry about him being wet all day while I am at work. He uses a power chair, has since day one practically. Also takes Ampyra which I am a sound believer in. 8 hours after taking his first pill he stood with my assistance just for a bit but it was something he was unable to do for almost 5 years now.

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