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Thread: seeking others w/ CENTRAL CORD SYNDROME

  1. #271
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    Very happy that warmer weather is finally here! Overall my shoulders do much better when it's warm. Started working with a new OT who has been wonderful. I will take a good OT over a whole team of neurologists, neurosurgeons, orthopods, etc. Things are finally looking up for me....my divorce is final and I am adjusting to a new town. When I first moved here, I got stuck in a restaurant's bathroom that had a too hard to open door knob. My daughter finally came to rescue me after 20 minutes! I asked her why she waited so long, she said she thought I was having problems (if you know what I mean). Now we don't go back there and everything's fine!

  2. #272
    Great news Jeffrx! About the bathroom rescue, new town, and finalized divorce. Hopefully this will be a new (and good) chapter for you.

    We are heading to the UP this June. Still don't like warmer weather but today was actually ok with my burning skin issues. I found a few new tricks and they seem to be working well enough.
    CCS/Walker C6...it's a long story

  3. #273
    Hello all its great to read these posts, I haven't been around for a while with all the health problems I've had and constant doctor and hospital appointments just wanted to get away from anything medical that was a mistake I now realise this forum is my sanity. As pointed in other posts generally those in and out of the medical profession do not understand the condition and therefore assume you are OK because our condition is more internal suffering and outwardly symptoms are not so noticable. Will post more soon with just a little detail of problems I have had and not all CCS related and to compare some of those symptoms. 3 half years now and things are about the same but in my head I feel my health is deterioating overall which seems to affect my overall health, its a vicious cyle

    Take care all and will speak soon X

  4. #274
    Senior Member Revis's Avatar
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    Quote Originally Posted by Shearsy63 View Post
    Hello all its great to read these posts, I haven't been around for a while with all the health problems I've had and constant doctor and hospital appointments just wanted to get away from anything medical that was a mistake I now realise this forum is my sanity. As pointed in other posts generally those in and out of the medical profession do not understand the condition and therefore assume you are OK because our condition is more internal suffering and outwardly symptoms are not so noticable. Will post more soon with just a little detail of problems I have had and not all CCS related and to compare some of those symptoms. 3 half years now and things are about the same but in my head I feel my health is deterioating overall which seems to affect my overall health, its a vicious cyle

    Take care all and will speak soon X
    Glad you are back on CCC, Shearsy63. This thread is usually quiet but every now and then someone new finds us and I think it helps a lot to connect with some CCS sufferers. Yes, what we suffer is not immediately obvious to others. My mobility has come along nicely except for when I'm fatigued. Most people who see me would have no idea that I'm dealing with weakness and pain. I'm 2.5 years in at this point. Just turned 62 on Monday. Happy birthday to me! I had expected to be a super active 60 and 70 something as I aged. Still intend to meet that goal, but sure wish it wasn't such an uphill battle. I continue to believe the more active we can be the better, with proper amounts of rest in between. I've been off all meds for a year and a half. Am riding a mtn bike, road bike, walk as much as possible, do my own yard work (wow that's a workout now)...working fulltime and traveling a lot because of it. I love this time of year in N. ID, weather is in the 60s and 70s...so less freezing or burning. All of you take care, and God bless.
    CCS/Walking Quad

  5. #275
    Happy birthday Revis for Monday since I came back on here last day I feel much more comfortable within myself, I honestly feel physically and mentally a lot better, hence the importance of sharing with your peers, partner and family/friends are wonderful and I love them very much but they do not undertstand the condition and because the problem is less obvious/visible than other conditions just forget and assume all is OK. I do not blame them at all but to share with others of the same ilk is very comforting. Over next few days I will document how I've been in last 12 months and see if others have had similar things, will do this bit by bit not one long post, I will start with my last and final appointment (12 months ago) with consultant and move on up to today. its been 3 years and 7 months since the accident and the start of CCS

    Speak soon X

  6. #276
    Senior Member Evonne's Avatar
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    Quote Originally Posted by jeffrx View Post
    Very happy that warmer weather is finally here! Overall my shoulders do much better when it's warm. Started working with a new OT who has been wonderful. I will take a good OT over a whole team of neurologists, neurosurgeons, orthopods, etc. Things are finally looking up for me....my divorce is final and I am adjusting to a new town. When I first moved here, I got stuck in a restaurant's bathroom that had a too hard to open door knob. My daughter finally came to rescue me after 20 minutes! I asked her why she waited so long, she said she thought I was having problems (if you know what I mean). Now we don't go back there and everything's fine!
    20 minutes!!!!! OMG that's a long time to wait in the bathroom. So glad that your divorce is final and you are adjusting well.
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  7. #277
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    I started a Facebook page on CCS. Not much there yet....head on over there and add some content! Going to get my artsy daughter to do some cover photos and backgrounds. i am just trying to educate people more on issues regarding CCS. Check it out

    https://www.facebook.com/CentralCordSyndrome

  8. #278
    So 3 half years later,
    ....coldness in hands
    ....weakness upper body
    ....tingling in hands and fingers
    ....stiff back and neck but not much pain
    ....clumsy struggle with buttons for example
    ....muscle spasms not sure for how long probably at least a year maybe since fall, consultant noticed I said I didn't get it much but since he pointed it out now I notice it but I am on medication for BPH which could be cause
    ....Fair to say depression at times.
    .... Some weight loss about 2.5 kilos off 70kg but doctor thinks its stabilised now
    .... Feels like some muscle loss which could explain weight loss
    .... Now have general health anxiety fear any hospital/Doctor visit, blood test etc.
    ....Like most on here really feel the cold
    ....If I stretch I shake so have to be careful like first thing in morning
    .... can no longer run just sort of twaddle
    .... slight gait when I walk but can walk far
    .... more tired have to have a snooze when I get home from work, reduced hours to 20 a week which is much as I can do but then it is a fairly stressful job this could be down to the fact that the simplest things we use to take for granted takes more effort
    ... feeling in right side lower back is strange and not noticable on left side just above hip, feeling of numbness or something there
    .... Think my posture is poor
    .... A feeling of general malaise

    What my peers on here, are symptoms similar frankly I've had little support from hospital since discharge, I don't think even the medical community fully understand it.
    Discharged from Neuro team last July they talked about MRI and possible operation I asked why wait 2 half year to offer this and have read enough to know that operation could make things worse and senior consultant from the outset said no operation could help, why the change felt like that Dr who saw me was treating me like an experiment, was therefore discharged.

    It helps to talk X

  9. #279
    Senior Member Revis's Avatar
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    Quote Originally Posted by Shearsy63 View Post
    So 3 half years later....felt like that Dr who saw me was treating me like an experiment, was therefore discharged. It helps to talk X
    Very nice inventory of all the symptoms that plague you Shearsy63. I found many parallels, although I don't think some of mine are quite as intense.

    It DOES help to have a place to share these so that others can interact with understanding rather than questioning, or simply not getting why it is that we can't just shake off these maladies given enough time.

    I have to keep saying to people, "I will never be the same again, barring an outright miracle. I have neurological fatigue, weakness and strange nerve sensations. These will always be with me in some form or the other. I have to push constantly through the weakness and pain to do what I do." People still stare at me as if they don't believe me, and that's because I look normal to them."

    Similarities:

    ....coldness in hands YES
    ....weakness upper body YES and Arms
    ....tingling in hands and fingers YES, both hands although if I'm in a recliner resting these symptoms can almost disappear, but only temporarily.
    ....stiff back and neck but not much pain YES, although I have pain with mine at times, depends on how much I've been doing
    ....clumsy struggle with buttons for example SOME, I have good dexterity until I'm tired.
    ....muscle spasms SOMEWHAT, I have twitching in my legs some at night.
    ....Fair to say depression at times. YES
    .... Some weight loss NO, I've been struggling to keep weight off.
    .... Feels like some muscle loss which could explain weight loss YES, due to less innervation of muscles. Bummer.
    .... Now have general health anxiety fear any hospital/Doctor visit, blood test etc. YES, I'm avoiding going to the doc
    ....Like most on here really feel the cold YES, and the HEAT
    ....If I stretch I shake so have to be careful like first thing in morning YES, when I stretch the body takes overs, although I have less of this than the first year
    .... can no longer run just sort of twaddle, NO...strangely I can jog.
    .... slight gait when I walk but can walk far, YES
    .... more tired have to have a snooze when I get home from work, SOME...I travel a lot and work upwards to 55 or 60 hours a week, wears me out!!!
    ... feeling in right side lower back is strange and not noticable on left side just above hip, feeling of numbness or something there MUCH of the same, I have dysaesthesia and parasthesia (sp?)
    .... Think my posture is poor YES
    .... A feeling of general malaise SOMEWHAT

    I can walk upwards to 4 miles if I really push it, but then I"m toast. Can ride a bike, but not as far as Cajun, who is an animal. Started skiing again this last winter, but must be careful and must rest on the lifts...no fast detachables fo me.

    I will throw in short (.15 to .25 mile) jogs when I walk, but I wear out quicker when I do so. Trying to push it here, especially on the bike, but it's slow in coming. Plus I'm 62 years old.

    Some days are better than others, especially after a solid night of 8.5 or 9 hours of sleep.

    Thanks for sharing this stuff...yes, it is good to compare notes.
    CCS/Walking Quad

  10. #280
    Thanks for sharing Revis it seems like nearly all of our symptoms are same just different degrees, I can jog for instance had to run for a flight a month ago partner made us late due to shopping in duty free lol! but never tried in a recreational sense, I'm sure weight loss is down to muscle loss almost exlusively shoulders/upper arms/legs I think this is down to lack of physical activity since accident although I was 51 when it happened i was still keen golfer, is is comforting to share as there are times I worry all these symptoms may hide other problems we are vulnerable to as we get older, I've shared this with my GP who agrees and understood but then we can hardly go to them every ache or pain we would be there 24/7, this I think causes health anxiety...

    Last year I had a sudden case of acute urinary (AUR) retention then spent nearly 12 months under prostate cancer tests had some horrible tests was cleared eventually and now have regular PSA test 3/6 months, I wonder if I could have gone to the Doctor earlier and avoided the AUR as I didn't feel right but with my daily symptoms couldn't explain, thats the problem. Its BPH (enlarged prostate) so on meds for rest of life one of them is a muscle relaxant so I wonder if this has accentuated muscle spasms?. its very difficult with these drugs to really get a handle of side effects unless you just keel over, had a feeling of unwellness since fall and gets worse, I only feel better sharing with my peers.

    So thanks for sharing

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