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Not confirmed and not sure .. left in limbo

Hi folks

I honestly don’t know where I stand. I’ve had long term, occasionally acute lower back pain which resulted in physio. I recently noticed some loss of sensation in my left foot, which travelled up my left leg although to a lesser degree. A lumbar mri identified a ‘discreet Intramedullary t2 weighted signal’ within the cord which raise the ‘possibility of demyelination/inflammation’.

The neurologist didn’t really explore previous back pain episodes and jumped straight to warning that I should be prepared for MS. No other obvious symptoms re balance or strength etc, although as I write this I do have some pins and needles in my left arm and a little bit of tiredness on my left thigh (although I’ve 2 young kids so am pretty active) which could be caused by playing with the kids.

I have a brain and spine mri, lumbar puncture and blood tests arranged for 3 weeks.

I don’t expect any advice to challenge the neurologist but would be interested if anyone has had a similar start to their MS journey.

Thanks in advance

Hi,

You should try posting your message to the newly diagnosed…

you will receive faster community feedback. Some there

are too are in the waiting stage. Hope all goes well for you.

Ive waited for diagnosis since 2013. August 2017 I was told RRMS

is real after another relapse. Even with symptoms, diagnosis can take a while

due to ruling out other conditions that mimic MS.

Hi

I don’t know quite what the previous poster meant about posting on the Newly Diagnosed forum since that’s exactly what you’ve done!

Although the neurologist said get prepared for MS, that doesn’t mean that it is MS. It just means that it’s a possibility. And the Lumbar MRI does of course indicate some demyelination, so that plus a physical exam is presumably what led the neuro to his/her suggestion about MS.

The trouble is that the road to an MS diagnosis, or indeed ruling it out, can be quite long and drawn out for some people.

At least the ball is rolling with MRI, LP and bloods all being done quite quickly. I hope the results come in equally quickly so you can get answers and can just start to get on with life.

A diagnosis of MS, if that’s the end result, isn’t necessarily the major problem it always was a few years ago. Most people have the relapsing remitting variety of MS and there are now many disease modifying drugs available to reduce relapses and the severity of relapses, so should you get that diagnosis, you may find your health is minimally affected for many years.

Let us know what happens.

Sue

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I am the “previous” poster…I was browsing through the site and noticed no one had replied yet. I was just trying to help.My apologies for misdirection of where to place your post Steely28…I will blame it on vision and brain fog (lol). It’s been a frequent visitor lately. Again, Steely28 please keep us updated.

Good luck.

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I appreciate you taking the time to reply. Hope to be posting some updates as and when I get them

thanks again

Hi Sue

thanks for taking the time to reply.

Apparently the lumbar MRI showed a ‘discreet T2 signal’ which the neuro said was inflammation but then went on to explain that usually this is caused by either infection or demyelination. I realise everyone’s symptoms are different but a slight numbness is my only real symptom, I can still feel even the lightest touch against skin. I now wish i hadn’t been as shellshocked at this consultation and had managed to put some rational questions about other potential causes and whether my long term lower back pain could have caused this result.

I must say the nhs has been exceptional to date. I initially presented at the gp around 20th August, returned about a week later as he sensation had spread and was quickly referred for lumbar mri. This next phase of neuro consultation and full mri,LP and bloods has been arranged long before my private health care could even offer the initial consultation !!!

My neuro is on leave for a couple of weeks and I’m tempted to visit my GP to discusss but I don’t want to waste their time.

I accept it may not be life changing in the near future but as I have 2 kids (aged 1&3) I am terrified of the implications for life with them as they grow.

Essentially the neuro didn’t discuss if this was more likely inflammation or demyelination nor precious extensive back pain and seemed to jump straight to MS. I’m unsure if she’s seen something which has persuaded her its MS or if she’s giving me the ‘worst case’ scenario.

thanks again for taking the time, I’m massively stressing about this. Increased my omega 3 intake though, which can only be a good thing regardless of outcome

It is always a good thing when our (usually) pretty amazing NHS comes through (unless you live in Northern Ireland in which case it sounds like it’s crap).

I assume that your neurologist went as much by the neurological exam I assume she did as your history of symptoms and the spinal MRI. Sometimes there are things we can’t tell but seem typical to a neurologist.

There’s no reason why you shouldn’t take the opportunity to see and discuss with your GP. I can imagine that you are extremely fearful, especially with such young children.

But, supposing it is MS, at least these days there are some really good disease modifying drugs (DMDs) available. They aim to reduce the number and severity of relapses. So there is every chance that you’ll get on a drug that means you essentially stay as fit and healthy as you are now for many years to come.

And the neurologist could have been wrong!

Keep talking to us, let us know what your results are. Have a look at https://www.mstrust.org.uk/a-z/diagnosis This will give you more information about how MS is diagnosed, including details about the various tests.

Sue

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Hi Sue

thanks for taking the time to reply again.

Apparently everything else seemed OK during the physical exam ie balance, reflexes, eyes, etc etc the only thing being the reduced sensation and lumbar mri. I assumed she had seen something which had a big ‘MS’ sign all over it as she explained the ms potential and continued to discuss about the ms nurse, DMD’s and that MS is the working prognosis. I left the appointment certain I’d just been told I have MS but a couple of tests would confirm, however, the letter sent to my GP (copy for me too) is much more ambiguous. It mentions “the possibility of demyelination/inflammation” and no mention of the working prognosis.

As as I said before there was no real chat about my previous back pain so I remain a little uncertain as to whether this genuinely appears to be ms or of the neurologist was prepping me for the worst case scenario. I’m sure she said the MRI return was in the T11 region if that makes sense.

I think I will try to discuss with my GP.

this forum is certainly helping me to get my head round things and prepare for life with MS if that is my outcome. Hopefully not too much longer to wait.