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  • very frustrated

    This past sept. I thought I was getting another kidney infection (I had been hospitalized for them twice in the past 2 yrs. They often spread really fast and get into the blood stream.) I felt weak and like someone was pounding me in the back. I have cerebral palsy and because my hips dislocate easily and my muscles are so tight I'd been in a wheelchair for almost a year then, but could get around my apt. using braces and forearm crutches.

    I went to sleep around 2pm and woke up a few hours later my legs felt like they were asleep (my left leg was completely numb) but my right one tingled (but I couldnt feel my right foot. (Even though I have cp I had normal feeling in my legs and could move them but the muscles were tight.) About an hour later I started feeling like I had a really tight belt around my chest and the back pain started getting worse (it was a stabbing pain).

    I called my friend and he took me to the er (he had to life me into his car because I couldnt stand and they had to left me onto the stretcher at the hospital.) By the time I got to the hospital I couldnt feel anything past just over my belly button. The Dr. I saw did xrays on my hips because they dislocate easily and said that it looked like I was getting Osteoarthritis in my left hip. He said that the feeling should come back and that I had probably twisted my hips or something. I could feel that my bladder was really full because my stomach felt really hard when I touched it with my hand but I couldnt go to the bathroom.

    It's been almost three months now and nothing has changed. I won't go into detail but even now I still don't have control of my bladder or bowels. (The only problems I had before was that I would get kidney infections). But things worked fine. I still cant fell anything from an inch or so above my navel down. I know this is not normal but I have no idea what is happening and if I mention it to dr.'s it seems like they don't pay too much attention to it because I was already in a wheelchair! I'm so frustrated and it seems like no one wants to take the time to even try to figure out what happened. I've even been told not to worry about it because I was already in a wheelchair and shouldn't worry! The only tests I ever had done were the hip x-rays in the er.

    I started searching for causes on the internet, and none of the symptoms for the other things I've found even came close to the symptoms I had. Does this sound like tm to you? I would greatly appreaciate ANY information or comments you have. Thank you so much for your time, I know my post was a bit long.

  • #2
    Hi ~newfie~,

    what happened to you does not sound dissimilar to what happened to me.

    I woke up one morning with huge chest pain, this got worse, then later I suddenly became paralyzed.

    I had a spontaneous spinal extradural haematoma - a freak bleed which squashed my spine, hence the pain and paralysis.

    Would it be possible for you to have an MRI scan?
    That's what alerted the docs to the fact that there was something on my spine, although they couldn't tell what until they opened me up to operate.

    Hope you get some answers soon,

    Keps.

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    • #3
      you should see a neurologist, prolly. that doesn't sound right.
      Daniel

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      • #4
        newfie,
        Where do you live?
        Do you have a GP or a long time ortho you can see and get referred by to a neurologist?

        You definately need to have more intensive testing.

        Three months of this is three months too long..no matter if your confined to a wc or not.

        The tightness of the chest is not a symptom of dislocated hips or arthritis either. There is something else going on also..and that something else maybe treatable. Have they done anything about your hips? How old are you?
        Life isn't about getting thru the storm but learning to dance in the rain.

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        • #5
          Newfie, that sure doesn't sound like CP or a kidney infection to me either. Frustrated? I'd be spitting mad. Were any tests done at all? Did you have any vaccines or illnesses in the weeks before your paralysis? Have you had any circulation problems in the past? Numb feet, or worse feet you can't feel, can be due to vascular problems. Any family history of heart or vascular diseases?

          You defintely need an MRI though just to find a cause for your bladder/bowel problems and the banding.

          The next time someone trys to put off testing because you are already in a wheelchair go ballistic on them! You are now numb so you cannot feel pressure sores developing, bladder complications requiring cathing or incontinence can lead to a worsening of your previous documented kidney problems and the lack of leg strength will, in time, if unchecked, lead to a need sooner rather than later for a very much more epensive powerchair to save your shoulders.

          I would also suggest getting copies of the ER reports that night and store them with your own files. Oh, if your bladder is still a problem ask for a consult with a urologist who specializes in neurourology. Your primary care doctor can give help you locate one. Just tell him it's part of the CP and it's effecting your baldder now if he doesn't get it..
          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

          Comment


          • #6
            Sorry I haven't replyed sooner, I haven't been feeling well. I moved recently and I'm still trying to find a family Dr. here. I didn't have any vaccines before this happened, but I did have a kidney infection shortly before it happened. That's why I just thought that the infection was coming back again or that it hadn't totally gone away.

            I will try to convince my Dr. to see about getting an mri done and to make an apointment with a urologist as soon as I get a family Dr. (I had an mri done less than a year before this happened, so that's probably a good thing because they might be albe to tell if something's different now or not). I also saw a uroligist quite a bit. I can't see the same one now because I'm not in the same province, but I have his name and things just in case someone wants to talk to him.

            The tightness around my chest went away awhile after this happened. I'm not sure exactly when, but that's the only real change. I guess I forgot to mention that in my first post... sorry. Right now I guess I just want an answer or at least for someone to try to find out what happened. I was in a wheelchair before, but I was also walking quite a bit with crutches too (I could even get around my apt. by holding furniture, adn walls) and I was doing better all the time. I guess what is getting to me most is that before I was getting close to not even needing to use the wheelchair (only for long distances outside) and now I have to use it and no one's trying to find out what's going on.

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            • #7
              ~newfie~,

              Help me out here. You mentioned "province" so there's a good chance you are in Canada.
              Which province are at? City? If you happen to be in Toronto, I can get you referrals.

              If you don't want to make this information public, PM me. I am a "Peer Support" volunteer at the Canadian Paraplegic Association (CPA) and had to go through all sort of checks to be one (RCMP, Health, etc) and I'm bound to confidentiality.
              Han Tacoma

              ~ Artificial Intelligence is better than none! ~

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              • #8
                http://www.myelitis.org/phpBB2/viewf...ef38caa318c62f

                I can't figure out why this link won't work right so it's the long string. Sorry Newfie and Hans. Looks like you could help set up a support group in Canada depending on which providence your in. I'll hunt around after the holiday party today for my latest TMA book. It should give me numbers on members in Canada. Often it just takes one person and then BANG you have a huge support group.

                Thanks for the added help Han. Didn't know you were part of the group up north.

                Newfie. great that you have a MRI for comparison. If this is due to compression from curvature of the spine or the like it may be reversible. Definitely get a new uologist and family doctor. You need to keep your bladder clear.

                I had banding in my lower back and it disappeared after about 4 or 5 years. I had a spinal stroke so that isn't always from TM. God luck and keep us posted as you get things done.
                Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                Comment


                • #9
                  Just an update

                  Just a bit of an update. I had an apointment with a neurologist on Feb. 1st. He was very nice, and after I explained what had happened to me and he had asked a lot of questions and examined me he said that it sounded like I have "something called transverse Myelitis" to him. (I never mentioned that I had read about it on the internet or anything because I wnated to go there with an open mind and wanted to hear what he thought and not give him any ideas at all). He is going to order an mri on the thoracic section of my spine. Then I will have to go back to see him.

                  He explained that he could refer me to a physiothearapist but that he really didn't think they could do much for me because I have a lot of muscle atrophy in my legs and because I can't move them he's not sure if excercises would help much. He also said that in all likelyhood from what he knows so far he don't think I will regain the ability to walk or much more function if any. I felt like he punched me as hard as he could when he said this. I guess I always thought that one day I would be able to walk again and everything would be back to "normal" for me. I never really thought that I would never walk again. I'm not giving up hope or anything, but I just can't seem to get those words out of my head! And it was said to me two days after my birthday.

                  The thing that made me mad was when he said that because it happened so long ago, there's probably nothing anyone can do about it. The Dr. I saw when it happened seemed to ignore it. If he hadn't things could have been a lot different right now.

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                  • #10
                    hi newfie i have transverse mylitis. if you have any questions PM me.I am usually in flash chat.
                    For every minute you're angry you lose a second of happiness

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                    • #11
                      Your doctor was wrong to not send you for therapy. You really should have had an inpatient rehab program (it is not too late for this). A comprehensive rehab program will not cure your TM, but it will help you maximize what you do have, and learn how to be as independent as possible, even with the paralysis. Ask your neurologist (who sounds like he doesn't know much about rehab) to refer you to a good physiatrist, and ask about either an inpatient or outpatient comprehensive rehabilitation program for you. Good luck, and stay on these forums.

                      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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                      • #12
                        I have to go back to see the neurologist after I get the mri. I was planning on asking him about physio again. When we were talking about it at the last apointment I wasn't really able to think about it too much because I had so much other information to try to absorbe. My upper body strength is ok (well except for my hands), and I can transfer and things without any help. It's weird because I have cerebral palsy and my muscles were always very tight, but now I can straighten my legs out all the way for the first time in my whole life, and they don't hop around so much. Now they are really floppy. It's completely opposite to how they use to be and it seems really foreign to me.

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                        • #13
                          Newfie - sounds as if someone is at least LISTENING now, how refreshing. Hope you get some good results.
                          Know how tough it is to hear those words. Hard not to look back on my "other life."
                          Keep after those docs -

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                          • #14
                            Originally posted by ~newfie~
                            I have to go back to see the neurologist after I get the mri. I was planning on asking him about physio again. When we were talking about it at the last apointment I wasn't really able to think about it too much because I had so much other information to try to absorbe. My upper body strength is ok (well except for my hands), and I can transfer and things without any help. It's weird because I have cerebral palsy and my muscles were always very tight, but now I can straighten my legs out all the way for the first time in my whole life, and they don't hop around so much. Now they are really floppy. It's completely opposite to how they use to be and it seems really foreign to me.
                            You might want to ask for a bone density test also. If your bones are in reasonable shae maybe some FES cycling exercise might help with a bit of the muslce atrophy. It can help your cardio and your frame of mind if nothing else. I'd also try to get a lot of time with an OT and see if you can learn new ways to do things with your hands.
                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                            Comment


                            • #15
                              Newfie, go for physiotherpay. It may help you in many ways.

                              I had mild cerebral palsy prior to an incomplete SCI at C 6/7 in 1993. My SCI was not TM, but I hear what you are saying. We aren't lost causes because we've each had two major disses in this lifetime.

                              Do what you must to get the best healthcare you can for yourself. I'm glad you pushed until you found a neurologist willing to listen to you. Make the case with your doc for getting physio. I have had this therapy on and off through the years and it has helped in a variety of ways from energy conservation in ADLs to building muscle where I can to endurance to stretching.

                              Keep us posted, okay?

                              I wish you the best. Mem

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