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HI-Just diagnosed, really confussed...can you help...

shashasshasha Posts: 5
edited 06/11/2012 - 7:40 AM in New Member Introductions
About 6 years ago I started getting problems, chest/back muscle spasms, breathing problems, electric shock pains into chest/back, problems with bladder/bowels. My doc put it down to IBS, depression and anxiety. I knew it wasn't depression as i love life, so over the years the symptoms have got worse, tingling down my back, then into my legs and arms. Pins and needles/numbness, more sever breathlessness, lack of body temperature control (when i get hot it makes me feel sick). In October my blood pressure dropped to 80/60 and stayed like it for a week, my doctor did all bloods and everything was negative so the admitted me to hospital. While i was in there, i had two episodes of (it was like electricity) shooting from my neck right down into my feet (like a high building being blown by dynamite), my legs went from underneath me, and i lost the use of my right side. That evening the same thing happened but is thime the shock stopped in the base of my spine. After that i could not even stand on my feet because of weakness in my legs.I had an M.R.I. and a lumbar puncture. i got the results yesterday, the lumbar puncture was negative, but the results are degenerative disc disease,with cervical spine left foraminal stenosis - sever C5-C6 and moderate C6-C7, there is a non specific high signal within the cervical cord at C6. This is now 11 weeks later I still have weakness in my right leg, i managed to start walking with a stick, pain in my lower lumbar region (though nothing has been mentioned on the report and puzzles me), weakness from my neck down my shoulders and into my hands (more so on the right side), body temperature problems, can't use or feel the need to use my bowels and breathlessness. Its scaring me. Last nite i was in much pain (i kind of ache from my neck down to my feet 24 hours a day) and again twice my right leg went from underneath me and my daughter had to pick me up from the floor. They sais there is no evidence of cord compression or disk buldge, i haven't been seen since i left hospital in October and am awaiting to see a neurologist, but why if the stenosis is on the left side am i getting alot of the problems with my right side.. and why are my bowel and toileting a problem. Does anyone know what a high signal in cord at C6 mean and is it normal to get breathing problems with cervical stenosis. Why am i getting lower back pain constantly if it is in the cervical spine, is it normal for my legs to go weak and give in on me. Does it affect your blood pressure. I know it is alot of questions but i am totally in the dark with this and only found out yesterday from my G.P. who gave me the report but said he couldn't go into it with me and has referred me back to to the hospital. I would so appriciate any help and advise, because this is destressing me and my children because we dont know the answers. Will it get better. Please help.....sharon


  • We talked briefly in chat the other day. The cervical spine issues can cause all kinds of problems. If you are having bowel and bladder issues you need to contact your Dr. NOW. This could be Cauda Equina syndrome and definitely needs taking care of ASAP.
    Maybe also look at a second opinion from a neurosurgeon. Keep us posted on how you are doing.
  • First of all I am very sorry for all of the pain and uncertainty that you are going through, second I am not a medical professional but I had the same issues that you are having with your bowels/also urinating and I ended up in the hospital after I went through the ER, the diagnosis was saddle anesthesia.
    Like Lisa told you, saddle anesthesia/Cauda Equina syndrome IS a medical emergency and you should either go to the ER or call your Doctor ASAP and mention this to him.

    My saddle anesthesia was diagnosed fairly quickly, but I still have to catheterized myself every single day, and I see a Doctor that has helped me with the bowel issues. This is something that you should NOT take lightly, so is time to do something about it.

    Like I said before, I am not a medical professional, but with the experience that I had, this is something that needs to be taken care of ASAP. I wish you luck, and please keep us posted in your progress.

    Take care,
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  • I wake up in the morining aching from neck to toes, i wake up wanting to, or crying and i go to bed crying. I had my first physio appointment this week. They told me they will be seeing me 3 times a week for the next 3/4 months to help me adjust to my new situation. He explained my condition and did explain my that my symptoms are in combination with my condition, he has said he is concerned with my breathing problems and that they are usually associated with C4, so wants me to talk to the neuro doctor about it. He has also ordered me a motorised wheelchair for indoors and a lightweight one for outdoors (which came today, YIPPEEEE). He did tell me the best thing you can do with this condition is stay off your feet as much as possible, he says for every 1 good day you have it is followed by 3 bad days. That scares me. Is it normal to wake up aching soooooo bad in the mornings that you don't want to wake up and feel that feeling. As the day passes it eases off, but by the evening its bad again like a bad smell... I HATE IT....Does it get better?

    Thank you for your assistance and advise, its just nice to hear from other people, who can say its not just you and yes its normal to feel like this, and we know these symptoms. Thankyou, i am calming down, and learning about my condition and trying to adjust.

    Thankyou again for reading and thankyou again for giving me your personal advise, it does make a difference.
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. so glad you stopped by. :D it sounds like you are adjusting very well. the two wheelchairs should be a big help and really get you moving now!! good luck and i hope you are feeling better soon. :D Jenny :)
  • Thankyou :H Jenny for your lovely message, it is hard but i think i will get there, where that is i'n not sure, but it has to be better than where i have been with all this over the last few months.
    It has been a real relief #:S to find this site and get to hear from so many brave, lovely, supportive people, it is here you realise you are not the only one and dont have to go through it alone.

    Thankyou so much your message brought a smile to my face and made me realise there are people who know and are feeling as me and in time hopefully i will be able to be an inspiration to others too.
    sharon :))) :)))
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