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Back again - still in limbo and a few more questions

Hi again everyone - thanks for reading my post last week. Since then I have had pins and needles in both hands every day which came and go but are particularly obvious when i am not using my hands.

I saw the ENT yesterday and she told me that my two MRIs confirm Periventricular white matter lesions which the radiologist reported as “possibly consistent with migraines with no evidence of demyelination yet.” The ENT seemed happy that it was the migraines causing my dizziness and the lesions but referred me to a MS specialist neurologist “because I can see you are still concerned.” I dnt know when my referral will be but she mentioned getting enhanced MRIs.

So my questions are these:
Are the pins and needles with MS constant or can they come and go throughout the day?
Do radiologists get it wrong - if they say they are migraine lesions are they?
Does anyone have any experience with migraine lesions causing other neurological symptoms?

If you were me, what would you be thinking??

Thanks, Sam

Hi Sam,

I'm not sure I shall be able to help very much, but anyway here goes:

No MS symptom is necessarily constant.  Everything can come and go - including pins and needles.  However, intermittent pins and needles don't prove that it is OR isn't MS.  Lots of other conditions could cause similar.

My understanding is that demyelination has quite a distinctive look, to the trained eye, so I think it unlikely an experienced radiologist would confidently pronounce there was NO evidence of demyelination, if there was any doubt.  If the results are ambiguous, they would tend to say "possible demyelination" - rather than "no evidence".  Nevertheless, a radiologist isn't qualified to diagnose - they only write up a report on what they see, which a neurologist then has to interpret, in the light of all the other evidence.  Equally, an ENT specialist can't really comment on the causes of brain lesions, nor, I wouldn't have thought, on very much to do with migraines.

Can I just check that you do mean "Ear, nose and throat"?  And can you remind me why you were referred there in the first place?  Was it because your dizziness was suspected of being an inner ear problem?

In your place, I'd be pretty sure by now that ENT is a complete red herring, and the problems are neurological.  But that still doesn't mean they're MS.  I've certainly heard of lesion-causing migraines, but I don't know what the long-term effects of such lesions would be - whether you could eventually expect some symptoms other than the migraines themselves.

I think it's good you're being referred to a specialist neuro, because I don't think ENT is the right camp, at all.

Tina

 

Definitely best to be seeing a neuro - ENT can't diagnose neurological conditions after all and migraine is a neurological condition.

 

Migraine can actually cause quite a few neurological symptoms, including dizziness, tingling and pins & needles. They can also come on without headache and, I think, although most migraines last up to 3 days normally, it's possible for them to last a couple of weeks or even more.

 

It would be very unusual for a radiologist to confuse migraine and MS lesions - MS lesions tend to have clear edges and are often oval/round-shaped whereas migraine lesions tend to be "diffuse" which basically means less well defined, "cloudier", fuzzy.

 

If you are having migraine that is lasting for days at a time and causing lesions then I would think that you should be on a preventative med. The neuro will be able to advise best though of course!

 

Fingers crossed that it is migraine and that it can be well controlled with the right meds. That'd be brilliant!

Karen x

Thanks for your replies. I thought as much with the imaging but then the consultant she has referred me to has a specialist interest in differentiating between MS and ischaemia plaques apparently. At least he should be able to give me a definitive answer I suppose!
Tina, it was ENT who referred me for the MRI to see ifthere was a problem with my inner ear and they found the lesions “by accident”. She was a bit clueless bless her and just read me a bit of what the MRI report said. She said my pins and needles were probably anxiety!

Really sorry you’re so miserable

It is possible for problems from childhood to cause a functional disorder, but having a functional disorder does not mean that someone must have had problems in childhood. (Does that make sense?!) Basically, if you had a difficult childhood, it may well be contributing to your symptoms. If you didn’t have a difficult childhood, then the counsellor is on the wrong track.

More importantly, a patient has to have faith in and trust her/his counsellor. If you don’t like yours, for whatever reason, then you should ask for another. In fact, your counsellor should be happy to refer you to someone else. Counselling doesn’t work unless the relationship works.

I hope things get better very soon for you.

(((((hugs)))))

Karen x