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Mis-daignosed?

After a sudden onset of sensory symptoms last summer, mostly in the form of numbness and pins and needles in my right arm and leg I was referred for an MRI, which showed no abnormalities. By the time I saw the neurologist a few weeks later my symptoms had all but disappeared but I was given a diagnosis of clinically isolated sensory syndrome and told that my chances of going on to develop MS were about 10%. I was offered a further MRI of my whole spine but as I was about to begin travelling abroad I was told it wasn’t absolutely necessary.

I was fine throughout the winter but in the spring I developed a few new symptoms, one being very embarrassing arm spasms, but also a general weakness on the left side. I notice my symptoms particularly exacerbate when I am either hot, tired or a bit anxious. At times I have to really concentrate on walking, finding descending steps especially problematic. I get tired very easily and if I walk too much or go up and down too many stairs, both my legs go into vigorous spasm. I can’t hold a book up to read in bed at night without my hands getting pins and needles and I get tired really easily. Another newish one is a horrible muscle spasm right in my sinuses which feels very weird.

As my travels are done for the while (boo) I visited my (new) GP today to report my new symptoms. She has referred me back to neurology and said that they will most likely want to re-do the MRI, to include the spine this time and possibly also the dreaded lumbar puncture and evoked potentials. Having said that, she said my symptoms seemed more in line with a disc problem but that I would need to be assessed by neurology first to rule out a neuro problem, which means I may have to go through two sorts of limbo. All this when I need to get back to work and am very uncertain about what type of things to apply for and how honest to be on applications.

Does anyone else think this sounds like a disc problem?

Hi Libby,

Very hard to tell, I’m afraid. The symptoms of a disc problem can be virtually indistinguishable from those of CIS/MS. Your symptoms are consistent with your spinal cord being compromised in some way, but without the further MRI, it’s impossible to tell whether this is due to mechanical impingement, or something more systemic, such as an MS lesion.

I was only diagnosed with MS after initial investigation for a supposed slipped disc, although, with hindsight, I think I’d been feeling unwell for some years, with low level symptoms of MS. I did not connect these at all with the suspected “slipped disc”, and neither did my GP. It’s only since diagnosis that I’ve had the opportunity to reflect on a long history of symptoms that were almost certainly MS, but which I’d managed (very successfully) to ignore.

I’d even had some of these investigated by Rheumatology, but as they’d given me the all-clear, I’d accepted it at face value, and not gone looking for trouble.

Sorry not to be more help, but a picture paints 1000 words, as the saying goes - you won’t know more 'till the results of the spinal MRI.

Tina

Thank you for your reply Tina. I know it’s impossible for anyone to know what’s going on and even the new MRI might not provide any answers, I suppose I’m still hoping the CIS diagnosis was wrong. Do you think a disc problem would be affected by heat/fatigue/stress in the same way as MS? The GP did say that the symptoms would fluctuate with a disc problem so I guess no clues there. Not sure about the weird sinus problems though. The only historic symptoms I have are fatigue which I put down to life as a busy mum and the odd twitches and spasms which I assumed were commonplace. Either way, I shall carry on as though nothing particular is wrong, concentrating on ability not disability, which would be the way forward even if I was diagnosed with MS. I hope your symptoms aren’t giving you too much grief and I really appreciate you replying to me :slight_smile: