Improvment in symptoms. Clinically Isolated Syndrome?

New diagnosis and before diagnosis
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Following on my weeks stay in hospital last July, due to weakness in my right leg, it’s only in the past few weeks that I’ve been able to stop using a crutch to walk with. Despite 4 MRI scans since then (head, cervical lumbar and thoracic spine), I’ve had nothing showing any lesions (apart from normal age related changes in my brain?). One thing which was picked up in my cervical spine MRI was slightly herniated discs at c5/c6 level.

I’ve also managed a couple of short bike rides the past two weekends.

Now my walking still isn’t great, but my mobility is certainly improving. However I still doubt I’d be able to do a full walking delivery at work though.

Next week will be 9 months since the onset of my symptoms, 23rd July 2020, where GP thought I had had a TIA / Stroke, so was sent to hospital! Thankfully no signs of that (unless it was missed?)

So what could this be? Was it a CIS I had in July, and I’ve been recovering since then? I am a bit worried that I’m going to get worse again. The only other thing which has been hinted at by the neurologist was “Functional Neurological Disorder”.

Next month is a repeat cervical spine MRI, and depending on the results of this, possibly a lumbar puncture. I’m also due to see the neurologist again, however there is a waiting list of many months…

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hey. what a post of good news - walking without a crutch and going for two bike rides.

Have you been offered a DMD?

if not discuss this at your appointment with your neuro.

Covid should be damned to hell for delaying appointments.

keep us updated please.

Enjoy walking and cycling!

good luck

carole x

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Thanks for the reply.

I’ve not been offered any DMD, I’m still in that limbo zone of endless tests with no diagnosis.

I believe the neurologist I’ll be seeing in many months due to his waiting list.

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That is excellent news that you are getting some improvement. Hopefully there will be more improvement to come. You may find it is a series of 2 steps forward and then one step back, rather than a linear improvement.

Some improvement and no diagnosis is a better place to be than diagnosis but no improvement, if you can only have one of those! The body / brain is pretty good at repairing itself when it can. So even if it isn’t true CIS, hopefully it (whatever ‘it’ was in your case) will be just a one off occurence. There’s so much still unknown on how the brain and CNS works, and there are all sorts of viruses out there that are not identiified, resulting in some people never able to get a diagnosis because the medical profession doesn’t yet have the diagnostic tools to make the diagnosis.