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Back from neuro appointment...

Well I’ve just got back and the appointment was both illuminating and frustrating!

I told him briefly what’s been happening, pointing out the main bits that worry me.
He had no answer for the brain freeze thing, or the disorientation when in water… or dizziness full stop really!

He told me my eyes are probably more to do with migraines, but people with migraines don’t have problems with their legs like I have, so my legs must be something else. Or bladder problems.

He also mentioned a lot, but not all, of my symptoms fit in with my original 2008 dx of ME/CFS, he did add on that he knew I wasn’t convinced of this diagnosis!! Which I am not.

He said MS, although possible, in his opinion is still unlikely (same as he said last year) As although I do have a lot of symptoms, they are the same symptoms, (albeit symptoms which are worsening) but not new ones. He did however keep mentioning my legs. I asked if he noticed any difference in my legs from last year, he said they were weaker but the difference was only marginal! (They don’t feel marginal!! :shock: )

I don’t really know what they are looking for in the exam, but I struggled pushing my legs up against his hand. Also last year the foot thingy they do to see which way your toes go, last year my toes went down. Today my big toes moved upwards, not much mind, but they still went up. And as he was hitting me with the hammer thing, my legs were jumping every where! Not sure if they’re supposed to do that!

Final outcome he said he wants to do a VEP and LP, but he doesn’t need another scan as I had one last year which was clear. I asked why, as it WAS 12 months ago… so he said well I suppose we can do a scan of your spine as we don’t have that just make the full set. So he let me go with some more blood test and told me I’d hear from him in about a month for my appointments.

THEN…

As I was handing my papers in to the desk to organise my other appointments I noticed a few things he’d written…

Exam: Evidence of demyelination ?MS
then he wrote: Possible MS but MRI NAD

So he told me to my face he though MS unlikely, but then wrote on my notes ‘possible MS and evidence of demyelination’ !!!

Oh something I forgot. He wrote on my blood form, weak legs, spastic paraparesis ??

Bit confused why he couldn’t think why you were dizzy (er, vertigo, pretty common!) or why you were losing balance in water (you are relying on vision for your balance system and when vision is compromised your balance is too), but despite these and the contradictions, at least you’re getting some new tests! It’s a step forward :slight_smile:

If any of them are positive, you might get your new brain scan too. And maybe a dx?!?!

Fingers crossed…

Karen x

Thanks Karen

He had a student with him, I would of loved to hear what got said after I left.

Do you think the toe going up was evidence of demylination and maybe that’s why he doesn’t want a brain scan? He seen the evidence already?? And the reason he’s doing all the other tests is to confirmwhat he thinks?

I think he does think its MS but just doesn’t want to tell me. (Although I could be grasping at straws!!) Or why would he be doing these other tests??

Think I am confusing myself more now :roll:

(I’m off to urology appt now, test results from bladder)

Thanks again Karen x

I have no idea why he doesn’t want another brain scan but I guess it’s because he says your symptoms are the same. That doesn’t help to see what “clinically silent” lesions may have formed though so I don’t think it’s a great decision, but then I’m not a neuro and I don’t have a budget to work with! (Clinically silent lesions are lesions that don’t cause any observable symptoms. They are common in MS.)

The toes going up is called a positive Babinski’s. It means that there’s something wrong with the upper motor neuron (basically the signals from the brain to the muscles). The “brisk” reflexes support that.

Jerky legs and spasticity often come from spinal lesions. So do bladder problems. That’s probably why he opted for the spinal scan.

He put ?MS on the paper, but all that means is that it could be MS. It doesn’t mean he necessarily thinks it is MS. From what you’ve said, he thinks it isn’t. But he needs to check - we all make mistakes! - hence the other tests.

You might want to ask your GP about migraine meds. Migraine could be causing your vision problems and maybe some of your other symptoms? It’d be worth a try anyway. (Not everyone with migraine gets headaches. Migraine is also more common in people with MS than the general population.)

Kx