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Appointment with neurologist (and onwards journey!)

So I saw the lovely neurologist again today. MRI was clear which is very good news! But he wants me to have nerve conduction tests, so will wait for that. Also said a chronic migraine issue (different tablets), possible BPPV causing the balance problems (I’m not entirely convinced on that as it’s not a vertigo type problem - but what do I know!) so another physio referral for that. Wants me referred to ME/CFS clinic, carry on with B12 injections and see him again in four months!

So not MS he says, but I’ve come to like you lot so I might hang around anyway! No change in any symptoms anyway so there’s a lot of help here… plus the humour!

Good news that you’ve not got MS Dahlia. Not so good that you’re still stuck in a limbo of no actual diagnosis.

Sue

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Thanks Grandma and Sue!

Yes limbo seems to be my home - or does that list (plus whatever else comes up) need to account for all the symptoms! Ho hum! (Or should that be Ho Ho Ho hum Grandma)

Should I get my coat now?!!

It’s a rather bizarre feeling this evening… am obviously pleased that the MRI is “normal” but after the initial relief of that plus not being told “It’s not MS, you’re discharged” which I had been concerned would happen there’s rather a flat feeling of being stuck right where I was! The neurologist was lovely in being thorough and wanting to get me better, and I so appreciate that, but I think he’s more positive than me at the moment. It will all still be there tomorrow! He said to me “we won’t do a lumbar puncture” - which is of course good too but I also thought (and said) “do anything it takes!” (And wondered why he mentioned it). And though my family are really relieved that it’s not MS, there’s still a part of me that’s not quite convinced. Perhaps that’s down to not having any concrete alternative/answer. It sounds ridiculous to not be entirely reassured. Oh well, there’s still a fair bit of stuff/referral to go, and it would perhaps be easier if it was all put down to the B12 deficiency alternatively, but “levels are good, keep on the injections” - I suspect that has a lot more to answer for too.

Still, I am very thankful today for LN and LGP (lovely neurologist and lovely GP!) this great group and for something like good news today lol.

End trans (sorry I still love the film “Jumpin Jack Flash”!)

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Great that your brain is ‘lesson’ free. That has got to be great news. But so sorry you have no real answers to the cause of your symptoms. Please stay with us. Being Dignoseed with ms does not make it feel any better, if one day someone manages to find a cure for ms, it could be different but as things are what difference does it make ?

I have been Dignoseed, but there are no more solutions for me than people with so far unexplained symptoms. Neorological symptoms are horrible, whatever the reason. You clearly are suffering from symptoms, that is real.

so, stay with us, take us on your journey to finding answers! A lot of people come here pre Dignoses, so your story unfolding will no doubt be useful for others in the futcher . Also I for one would miss you.

p.s. Sorry my spell check cannot sort all my spelling issues.

Thanks very much Sarah for your wise words!

(I had to go back and look for the spellings lol!!)

You lot are great

Impressed… got the patient copy of the neuro’s letter to my GP today, from the appointment on Tuesday!

So, I’ve got the appointment through for ‘nerve condition’ tests at the end of January. The letter gives a bit of an idea what happens (electric current and needles!) but guessing this isn’t the same as EP’s?? So is this a usual nerve test, what’s it like and what are the nerve tests others have had?

(I can of course google some more now and find out difference/not! Lol)

I googled! So am I right in thinking that my nerve conduction appointment (mentioning arms and legs) is one of the ‘evoked potentials’ tests?

Hi, I’ve had SSEP (can’t remember what that stands for) which involved electrodes on my head and limbs. It wasn’t painful and think it was checking responses. Also, VEP which I think is visual evoked potential. This involved electrodes on my head whilst watching a chequer board. Both of mine were normal and they told my straight away.

I have also has nerve conduction tests booked by GP which tested peripheral nerves.

Hope that helps although I’m sure somebody far more knowledgeable will explain it better.

The MS Trust has this to say: https://www.mstrust.org.uk/a-z/evoked-potentials

So all the various types of evoked potentials tests measure nerve conduction, ie the speed it takes for a stimulus to reach the brain. They include Visual (VEP), Somatosensory (SSEP) and Auditory (ABEP).

Typically, an MS diagnosis might make use of VEP and SSEP. ABEP could also be relevant.

Sue

Thanks both! The letter mentions arms and legs so I presume it’s SSEP. The link was helpful, thanks Sue :slight_smile:

Think I got confused because I’ve most often seen VEP mentioned here and that didn’t seem to be what I was having.