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MRI showed "something"

Hi everyone, I’m new to the forum so I hope that this is the right place to post.

A few months ago I was referred to the neurologist because of a twitching muscle in my face which had been bugging me for a month. The neurologist looked at me as if I was insane but after hearing that I had other muscle spasms he sent me for a nerve conduction study as well as an MRI (to be on the safe side). After a few months of waiting I had both the tests, then a few months later I was sent the results along with a letter saying my follow up was going to be delayed by 4 months till September (I am moving away in August!).

The nerve conduction showed nothing but the MRI showed “features suggestive of demyelination”, so now I am in a waiting zone. My new appointment has come through (only 1 month after the original date rather than 4).

My trouble is that I am getting really stressed now and am experiencing symptoms very similar to an MS flare up but I don’t know whether it is just stress, psycosomatic or actually MS.

Hi, I know it’s hard but try not to be stressed, that could well make any symptoms feel worse.

The only person who can give you a diagnosis is a neuro. MS mimics so many other complaints, so you’d need to have a lot more tests done before the neuro (might) be able to give you a dx.

Sorry to say but it can be a very long time before you’re at the point of being diagnosed, it’s usually a waiting game.

Good luck

Rosina

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Thanks. I just don’t understand why the Neuro thought it’d be a good idea to send me a letter saying what the results showed 6 months before he planned to see me in clinic to explain what it means and then book the additional tests. I’m most concerned about moving to a new area and needing to start all over again.

hi

as rosina said, try not to stress.

if you move areas the neuro will send all information to the new hospital so you needn’t worry.

my top tip - learn to relax!

mindfulness meditation is a good tool that will stand you in good stead.

take care

carole x

I have now had my follow up appointment with my neuro and he basically told me what was in the letter he sent me. He then told me that he cannot personally tell what the “shadow” means so he will now ask someone who can interpret an MRI and then when he hears back he will look at follow up tests (for some reason he couldn’t send the scan to the other doctor when he received it and did not know what it showed, when he saw it a month ago).

He did not want to hear about any of my other symptoms (which I had not been referred to him for). I have numbness and pins and needles in my left arm, hand, lower leg and foot. Chest pain, pins and needles in my face.

Didn’t want to know, didn’t seem to care. Just told me, don’t worry, get on with your life.

And I’m still waiting, I’ve heard nothing from my neuro or the one he’s consulting. Thankfully my own GP has given me some Diazepam 2mg to treat the cramps in my back, leg, shoulder and hands which has been great becuase it has made those symptoms manageable.

The pins and needles are still there as well as some numbness and “weird eye problems”" but with the cramps lessened I can at least carry one working.

Is it worth calling up the neuro to see if they’ve heard anything yet?

Hey dude, how are yer ? Define ‘weird eye problem’… someone on here has probably had it too. … Take care, Andy

Ok my weird eye problem comes and goes which has made speaking to doctors about it difficult.

I get blue/green light flashes in my peripheral vision when I move my eyes. My left eye vision seems, I don’t know, somehow darker than the right and I get migraine like pain IN my eyes from time to time.

What has made it a real problem is the one time that it was going on for a long time, I went to my GP and was referred to the hospital. It took over a month but when I saw someone they noticed my eye pressure was slightly elevated and then that was all they wanted to focus on for the next few years. :frowning:

I get weird silver flashing now and then, flashes of light too, but very infrequently. Headaches are weekly. … when I lost my eyes, my vision was like an early hand held camera, like on 90’s documentaries. Just shook, could never focus. And specialists grab onto specific symptoms like a dog to a bone. …

Don’t I know it!

I got fed up of waiting so I called the hospital, spoke to his (Neuro) receptionist and asked if he’d heard back from the other Neuro as to what they thought the scan shows.

The answer is…he hasn’t sent the letter yet! He told me we’d hear back in a couple of weeks and yet a month later he still hasn’t even sent the information to the other Neurologist yet!

I know it probably is nothing on the scan, sometimes a shadow is just a shadow etc. I just want to be treated with some respect and understanding that it may only be a couple of white dots to him but it’s in MY BRAIN!

Absolutely. It sucks. But it’s just a job to them i guess. Hope when you finally get the news it’s positive. … ( as in good news :wink: ) Take care, Andy

UPDATE Finally got some more about my MRI results, however I’ve been left with more questions than answers. The consultant Neuro sent his reports to my own GP and she sent them on to me, he advised a CT and an LP because the MRI showed some signs of demeylination. However. My original Neuro has sent me a letter saying that the consultant said the changes where “non specifc” and therefore did not explain my twitching symptom (the only symptom he listened to me about) and that it is probably just anxiety. The thing is, I’m not experiencing anxiety! Anger? Yes! Frustration? Yes! But no anxiety