- Oct 20, 2022
- 7,941
Apologies in advance for the long post.
Just to be clear, this isn’t a post for self pity or sympathy but a genuine request for information.
Some (many?) of you know by now I have had severe widespread pain and mobility issues that has got progressively worse in the past few years along with progressively worsening balance issues, brain fog and fatigue. All of which has also taken a toll on my mental wellbeing and autistic symptoms but I have managed to avoid depression fortunately)
After travelling to Brighton last week, my symptoms took a turn for the worse and are still very acute. I have had severe head and neck pains, shooting pains and pins and needles with sciatica in both legs as well as muscle weakness and nausea ( from the pain) at a level I have not experienced before. I have been diagnosed at various times over the years with several autoimmune conditions, a neurological condition and more recently Long Covid and arthritis but this is the worse I have ever felt.
Last month I had MRI brain, cervical and lumbar scans because my mobility has become so bad. It showed among other things, the expected T2 white flares associated with my neurological disorder and brain atrophy ( expected).
However, my MRI of the neck showed advanced and “severe cervical foraminal stenosis“ ( progressive narrowing of the spinal canal that compresses the spinal cord). Untreated it can lead to paralysis and even death.
I am waiting to hear back from the Neurologist hopefully about a referral to an Orthopaedic Surgeon but does anyone have “severe forminal stenosis” to the point it has advanced to neurological symptoms and if so, have they had steroid injections or surgery to take the pressure off the spinal cord?
I have had physio and various prescription painkillers thrown at me over the years that haven’t worked because in the absence of a proper diagnosis, it was the wrong treatment. Instead, the degeneration has progressed to an advanced stage in the absence of a diagnosis and I don’t know what if anything can still be done.
I am wondering if there may be one or two NSCers who have this disease and can share some experiences of treatment etc.
Thanks.
Just to be clear, this isn’t a post for self pity or sympathy but a genuine request for information.
Some (many?) of you know by now I have had severe widespread pain and mobility issues that has got progressively worse in the past few years along with progressively worsening balance issues, brain fog and fatigue. All of which has also taken a toll on my mental wellbeing and autistic symptoms but I have managed to avoid depression fortunately)
After travelling to Brighton last week, my symptoms took a turn for the worse and are still very acute. I have had severe head and neck pains, shooting pains and pins and needles with sciatica in both legs as well as muscle weakness and nausea ( from the pain) at a level I have not experienced before. I have been diagnosed at various times over the years with several autoimmune conditions, a neurological condition and more recently Long Covid and arthritis but this is the worse I have ever felt.
Last month I had MRI brain, cervical and lumbar scans because my mobility has become so bad. It showed among other things, the expected T2 white flares associated with my neurological disorder and brain atrophy ( expected).
However, my MRI of the neck showed advanced and “severe cervical foraminal stenosis“ ( progressive narrowing of the spinal canal that compresses the spinal cord). Untreated it can lead to paralysis and even death.
I am waiting to hear back from the Neurologist hopefully about a referral to an Orthopaedic Surgeon but does anyone have “severe forminal stenosis” to the point it has advanced to neurological symptoms and if so, have they had steroid injections or surgery to take the pressure off the spinal cord?
I have had physio and various prescription painkillers thrown at me over the years that haven’t worked because in the absence of a proper diagnosis, it was the wrong treatment. Instead, the degeneration has progressed to an advanced stage in the absence of a diagnosis and I don’t know what if anything can still be done.
I am wondering if there may be one or two NSCers who have this disease and can share some experiences of treatment etc.
Thanks.
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