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Share my experience so far (:

CrutchyCCrutchy Posts: 1
edited 01/24/2013 - 10:20 AM in Degenerative Disc Disease
Hey guys, new to the forum. Thought id share my experience so far. Kind of in limbo right now with no diagnosis, am waiting to see a Neurologist, it's been a very long wait, got two more weeks to go. Share my thoughts so far and what has been said. Worst part for me is not knowing for sure what this is.

I'm 32 years old been fit and well have a partner and we have children and enjoy an active lifestyle and work as a support worker, in 'October 12' I began to feel dizzy while working and legs felt heavy almost like walking with bands attached around my legs, the more I did the more restrictive it felt, I kept working for a while but then it reached the point where my balance was to poor. Was signed off work sick and basically house bound told not to drive and take it easy. The dizziness at time would feel really bad along with balance issues and burning sensation in my legs, like warm water had been poured down them. I was referred to an ENT as initially it was thought it may have an ear problem..

The ENT was brilliant quickly deterimined my ears were fine and it was something else was booked for neurologist. With weeks to wait, during this time I started to feel worse, went into A&E one night after feeling very unwell, I was kept in hopsital for 5 days, had MRI scans, lumbar puncture done during this time. They said they could rule out things like MS etc but they had found 'wear and tear' at the top of my spine but it shouldn't be causing my walking / balance problems?

After being released from hopsital I was next sent to physio, the physio woman was lovely, took one look at me and my walking / gait and said it was neroulogical that my legs were not right, now referred back to the ENT who along with the physio tried to get things rolling for me. The ENT tried to get me an earlier Neurologist appointment with no luck had to wait about 6 weeks. My doctor signed me off work until Febuary. My doctor looked at the Spine MRI and said that I have degenrative disc disease in 3 discs on my upper spine. He also said he doesn't think there is enough compression to be causing my symptoms? This has left me really confused, as the ENT had suggested I had a stenosis and my symptoms fitted that. I'm being told there is something wrong with my spine but isn't causing my symptoms? Symptom wise I still have warm water sensation running down my legs, tingley feeling in legs and feet, balance issues whilst walking, and right arm and wrist feel numb and can get painful, my lower back can also get painful but it's sporadic.

Now im kind of in limbo waiting to see what happens next, my life has been altered dramtically, no longer working, not driving and walking with a crutch, my next appointment is on Febuary 6th with the neurolgist. The worst part of this has been not knowing what it is like still no diagnosis. I really want a diagnosis so I can fight this thing and get my life back on track at least at some kind of level.

Has anyone else experienced similar things whilst getting diagnosed with spine problems?


  • I am not a doctor, but I do know quite a bit about the spine through being a nurse and having years of issues myself. I would say there is something neurological going on. Any spine issues you may have would not likely cause some of these issues. I am not sure exactly where your spine issues were on MRI, but there are very specific nerves that are affected when the spine is involved. The lumbar region is usually associated with leg pain, numbness and tingling. The cervical spine is usually associated with arm and hand pain, numbness and tingling. These are the nerves that run through those parts of the spine. I am not as sure about thoracic or mid back, as it is pretty rare to get an injury there. There are charts that you can get on the internet that show what nerves run through each vertabrae. I will also say that most people will have bad discs and issues come up on MRI that may not ever cause them any problems or symptoms. We are pretty tough on on our bodies. Most of your symptoms sound neurological related. Neurologists are sooo busy. It does take forever to get in with one. They are seriously in demand. I also had inner ears issues when I was younger, ENT's are great but they are not neurologists, they are not experts at spine health or neurology, they make think they have the answers, but I believe you need a neurologists opinion much more. I feel for all the stuff you are going through. I hope you find the answers you need.
  • By now you would have seen your Neurologist.

    Have you been given any definitive diagnosis for the cause of your symptoms yet? And, if so, what was the outcome?

    I hope they have managed to find the root cause of your problems and are doing something to relieve them (medication, treatments, onward referrals and/or further testing etc.).

    Good luck and perhaps you will let us know how you get on ok.

    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
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