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Neuromuscular Diseases Message Board


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Hello people,
I'm new here and was just wondering if anyone else had experienced this sort of issue.

I came out of hospital a couple of weeks ago after spending over a month there, with no diagnosis, just a recommendation for long term rehab/physio.

9 weeks ago I noticed a numb toe and thought nothing of it at the time. However since then, I've had progressively more difficulty walking, the numbness has progressed up my legs all the way up to my thighs. About a week after being admitted to hospital, it started to attack my bowels and bladder due to spastic sphincters. My legs and abdomen are rapidly weakening. I'm reliant on crutches to walk indoors now and am only just about able to manage maybe 10 metres on them, even taking extreme care. I'm now having to use a wheelchair outside due to being at a high risk of falling.

I had pretty much all the standard tests done, all of which came back clear apart from my c-spine MRI. This showed osteophyte complex on the c4,5 and 7 vertebrae with thecal sac compression at 5/6 and 6/7. My neurologist however said this was not significant enough to be causing my issues. I have severe upper back nerve type pain, and the same in my hips/upper thighs, however that has been present for a couple of years.

After all this I was discharged from the hospital with a label of neurological functional disorder, and told to keep up with physio and things should resolve themselves. Post-discharge I have continued to deteriorate and am now reliant on manual bladder and bowel management techniques as well as being mostly chair bound.

So I was wondering, is there anything physical that could cause this? Or is it truly in my head as it were. With the label of functional disorder it's incredibly hard to get proper support, compared to where there is a known physical cause.

Thanks for reading, if you have any insight it'd be much appreciated.
Chiisai
Sorry no one has responded to your post. I usually hang out on the "Back Problems" board, but noticed your post and wanted to welcome you to the forum.

Your problems sound complex. Unfortunately that often means you will just have to work harder at finding someone who can figure out what is going on.

I'm sorry I don't have any suggestions for you, but I wanted to mention that even if something is "just in your head," it doesn't mean that it is not real. The spinal nerves and the brain function as a unit and control how we move, how we experience the world around us, our senses, etc. If it weren't for the nerves sending a signal up to the brain, and the brain interpreting it as pain, you wouldn't remove your hand when you touched a hot burner on the stove.

Some of your issues sound similar to what many of us with spine/back problems experience...but then other things don't add up...If the thecal sac compression at C5-C6 and C6-C7 is severe enough, it could definitely lead to problems not only in the upper body, but can also affect the lower body as well. If you lived in the US I would suggest you make an appointment with a spine specialist, which here would be a neurosurgeon or an orthopedic spine surgeon, but I know the UK operates differently...but I think you need to learn more about this thecal sac compression.

I hope you are going to find some answers soon.





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