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  • Who here has MS?

    Just wondering who here has MS, how long, how bad, etc. etc. Please introduce yourselves.

  • #2
    I do.

    Diagnosed in 1994. I'm not sure how to respond to "how bad" - more than MS lite, less than many other people are dealing with. I use a wheelchair pretty much full time, and have been working part time for 2 years now due to fatigue.

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    • #3
      My first acknowledged symptom was an episode of transverse myelitis in 1998, but the neurologist said that in retrospect there were much earlier signs. In the 12 years that have passed, it's gone from slight foot drop after several minutes' walking to near-paralysis on the left side (arm and hand included), with progressive neuropathic pain and spasticity. I understand that cervical cord lesions (of which I have several) tend to produce symptoms of this kind, especially in conjunction with bone spurs and stenosis. My situation is complicated by the presence of inoperable sacral nerve root cysts which are contributing to cauda equina syndrome - so I'm a bit of a mixed bag, but primary progressive MS is thought to be the main issue.
      MS with cervical and thoracic cord lesions

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      • #4
        Not me, but my mother does. She has PPMS. First symptoms were probably an attack of trigeminal neuralgia and then about a year later, gradual onset of one legged weakness resulting in toe drag and falls. Never had an MRI (dx. in 1981 before MRIs were widely available). Currently has limited use of one arm (none of that hand) and fair use of the other arm (with signficant tremor), and cannot walk nor stand. Uses a power wheelchair full time, a lift, and requires intermittent cath (dependent) and bowel care from a caregiver. Current EDSS score is 9.0. She can feed herself and use a computer, and still knits some.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          Been there, done that, got the t-shirt. I've had symptoms since I was 17. TM secondary to the MS (weird, I know) left me a T-10 para last year. MS just finished the job this summer at the C6-7 level. I'm thinking of starting a betting pool...vent next time? (sic)
          Disability Humor

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          • #6
            Thanks for responding. I have been here for awhile now and just really never new who the MS people were. I am the caregiver for my husband, David, who was diagnosed in 2005. He has symptoms in July 2005 where he was dropping his pencil or whatever he was holding in his right hand. Took him to the er because in 2000 he had broken his back, everything was fused together and he had made a complete recovery but we had wondered if a rod had come loose and pinched a nerve. Nope, but the didn't know what was going on. Well, that all went away and then in October 2005 he started having stomach cramps, so we though appendicitis, gall bladder, something simple. Nope, that was his bowels shutting down, seven days later he couldn't eat, talk, walk, see, breath, use his left arm, control bladder or bowels. It has been a long five (almost) years but things have improved, he went from a manual chair that I had to push to a power chair, his eyes have improved, not great but improved, he can talk just fine, his right leg works great, his left side arm and leg is working but very tone and spastic. I control his bowels with a bowel program and bladder is emptied with a suprapubic cath. Oh yea and he is breathing on his own. Started taking Ampyra in May of this year, 8 hours after first pill stood with my help, actually a death grip on him because I didn't think it would work, but now is standing for about three minutes. Now its on to some serious muscle rebuilding. We used to really on a ceiling lift or hoyer advance but now he can stand to transfer. We have two daughters, one whos getting married in November and one who is a senior this year. Also one granddaughter. He takes Beteseron injections every other day and also had to have his left ankle fused due to the tone, it had turned inward and downward. Nice to meet you all.
            Lisa

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            • #7
              I'm glad to know the members of the MS community here, too - very nice to meet you! Thanks for starting this thread, Lisa.
              MS with cervical and thoracic cord lesions

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              • #8
                Hello I was DX in March of this year (2010) I had an episode of Tranverse Myelitis is 2005 which left me with slight numbness in both legs then in Feb of this year it started all over again, it took three trips to the emergency room for the final DX to be made. There are days like today that I can hardly feel my legs but there is so much pain I don't understand it just yet. I have good days then there are the days I just want to scream.

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                • #9
                  I was diagnosed with MS a number of years ago, with trigeminal neuralgia, eye problems and trouble walking. I disputed the diagnosis, because about the same time I took a fall off of the sidewalk here at home and into the landscaping. I injured my neck which had been really hurting me and the weakness was getting to the point of having to quit work.

                  My neck was hurting for years and pain radiating down my arms, and I had a lot of weakness in my legs and some foot drop on the worst days. My doctor had concluded that I had MS and wasn't going to look any further.

                  I insisted on seeing a Neurologist and then the fun began. She forgot to send the referral three times, then they lost the referral, and finally I called the boss to get my referral. I think she finally realised that there was something else going on for the past 15 years and was scared to find out. I was right, there was something else going on.

                  Turns out that there is severe stenosis at the C-4 to T-2 levels. I mean severe stenosis with cervical myelopathy, bone spurs and all kinds of trouble. instead of being about 13 mm at that level, the cord is only 5mm with all of the overgrowth of bone. The foramina are full of bone spurs and the source of much pain. I had the worst one fused at C-5/6 and then the neurosurgeon tells me that they all need to be fused. Then he dropped me as a patient because he did carpal tunnel surgery on the wrong hand...long story.

                  There are cetain symptoms that are similar to MS and cervical myelopathy. I wonder how much function I could have preserved if only that doctor hadn't just dumped me into a certain category.

                  Yeah, I may have MS but I also have cervical myelopathy.

                  I worry now because my son has been having right side numbness and weakness for the past couple of weeks. He probably also has MS. We will find out only when we can pay for it because he is uninsured.
                  Anything worth doing, is worth doing to excess

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                  • #10
                    I hear you, Skippy...I, too, initially had a series of misdiagnoses and missed results. On another thread, Dr. Young said that it takes 30 minutes for cord compression to do permanent damage, and we all know how long it takes to actually get a diagnosis, never mind the necessary tests; so maybe earlier intervention still wouldn't have helped your c-spine situation. Pretty much all we can do at this point is look for the silver lining, and it ain't easy. I hope your son doesn't have MS.
                    MS with cervical and thoracic cord lesions

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                    • #11
                      Skippy don't wait, even if he doesn't have insurance, there are programs for that. He needs to be seen and started on a ms therapy asap. I truly believe if they would have started David in July maybe he wouldn't have had the other attack in October. I know its always guessing but still don't gamble with it.

                      I am so glad to have started this thread, I have learned so much from this sight but really appreciate those of you who understand this horrible disease as well.

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                      • #12
                        I really hope my son doesn't have it either. He complains that his eyes are bothering him too. He thought he needed a prescription change last time this happened, but like most of his symptoms, it went away.

                        I'm not looking forward to the next few months. It is the time of year when I have most of my symptoms too. I call it summer fatigue. I stay in the house out of the heat in the summer, but each year from Sept to December I have most of my problems.

                        My eyes have already started with the muscles not working together so I have occasional double vision. It get to be the worst in December after a gradual buildup. Lots of headaches.
                        Anything worth doing, is worth doing to excess

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                        • #13
                          Heaven knows I'm not a doctor, Skippy, but based on my own history and research it sounds like you might have MS along with additional cord pathology, similar to mine. Your son's symptoms are pretty classic for MS, but I think that if he wants to go on one of the MS meds, he'll need a doctor's definite diagnosis. My very best wishes to both of you!
                          MS with cervical and thoracic cord lesions

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                          • #14
                            Barging in here, but WOW am I glad I found this site. My husband has MS and it is just progressing and progressing. He's 40, completely wheelchair bound and unable to assist in transfers.

                            Every time I feel like I have a "handle" on how he is, what he needs, etc. things change. That's MS for you.
                            25bb03d5-f511-4009-8145-6a3f582673a2
                            1.03.01
                            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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                            • #15
                              Originally posted by Knight's Wife View Post
                              Every time I feel like I have a "handle" on how he is, what he needs, etc. things change. That's MS for you.
                              Yes, it sure is. Welcome to the forum, this is a great community and I'm glad you and your husband found your way here.
                              MS with cervical and thoracic cord lesions

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