Clear MRI on spine and head

New diagnosis and before diagnosis
1

Good Afternoon Everyone.

I posted on this site back in the beginning of December, with my symptoms prior to my MRI for some in sight, I have had my MRI done, followed by a gruelling 4 week wait for results. I had the phone call yesterday from my doctor with the results.

Nothing to show any demyelination and basically it was all clear on both head and spine. So now have to go back to get referred to see a Neurologist.

I kind of wanted some confirmation, i know the frustrating part is it can take a long time to diagnose, but my symptoms are daily in one way or another, and has been now since the end of September.

Can anyone shed some light on this, does this definitely confirm i don’t have MS?

my symptoms are endless.

– Eye disturbances – double vision, black dots, white swirls, shaking of eyes (Been to opticians twice, said eyes look fine)

Legs feel really heavy, like I am walking through mud (happened 3 days but not recently)

Weakness in arms / legs - Legs feel jelly like when walking down stairs (on going)

Random cold / numb patches on body intermittently

Body twitches all over body throughout day. (now subsided)

Bug crawling feeling on nose, (lasted 2 weeks at the beginning)

During night, get woken up with severe burning pains, in arms, and recently both knees (3 times)

loss of feeling- all of my face and spread down my left leg. (the feeling has come back in my leg, but not my knee, and also my face, but sometimes it will feel numb)

Cold feet. (happened for 4 days)

Feet burn if stood on it for longer than 5 minutes

Neck ache & sharp stabbing pains

Tremors with neck and arms when moving into certain postures, which makes me feel like my eyes are shaking (current)

Stomach constantly popping, full of gas (intermittent)

Middle of night, feel like my whole body is buzzing. (happened twice)

Numb patches on stomach (happened twice)

Head and neck sometimes goes really warm

Ear problems – sensitive to sound, sometimes when I speak I can feel my voice echoing inside my ears when I talk. (right ear)

Sensitive to light

Lightheaded and slight dizziness.

Spams in trunk of body (happened once, spasm in neck, spasm in jaw happened twice, during night time in bed)

tinnitus (This has just happened and been like it for the past week)

Surely all this can’t be nothing.

Could anyone advise, or if they had the same situation. I am trying my hardest to get on with life. But it is hard when you are constantly having weird sensations happening to your body.

Thank you for taking the time to listen.

Stacey

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Hello Stacey

Having a clear brain and spine MRI definitely clears you for MS. The disease criteria is here: https://www.mstrust.org.uk/a-z/mcdonald-criteria As you can see, all the ways of diagnosing MS include demyelinating lesions on MRI.

This might mean you don’t have MS (it does), but it doesn’t mean you have nothing wrong with you. You need to go back to your GP with your list and see what they have to say. For example there’s Functional Neurological Disorder (FND). Have a look at https://fndhope.org/fnd-guide/

Definitely don’t give up on getting a diagnosis. It’s not usual to experience symptoms like you are doing. So keep seeing your GP. Keep seeing your neurologist if that’s possible, ask what else they could look at given your symptoms.

Best of luck.

Sue

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crazy isnt it, you have a ton of symptoms you would think something would show up on an MRI, but you know what the brain is a powerful tool, it can make you believe in a lot of things, when you have little else to do but worry about 2 days of buzzing body.

Your body will then chuck out a lot of stuff which will worry the hell out of you. OR it could be you have something else going on and the GP needs to do some proper tests for low b12, vit d, ANA, etc, as what you are describing could belong to a ton of different things even anxiety.

I am just glad your MRI was clear. Your neuro was good he did one of brain and spine. sometimes they only do the head. so as you have nothing on either I doubt it would be MS.

BUT it doesnt mean you are not well, it just means one thing has been eliminated. FND is a good place to start ssue has sent you the link.

but for me i would go back to GP and ask for blood tests as you want answers.

when you look at your symptoms non are life threatening thank goodness so perhaps why not take a break from worrying about why they are there perhaps?

Find something to do which will consume your mind so you have no time to think about the odd burning etc and maybe they will just slow down and go away.

I was in so much pain the other day with my PPMS (IT TOOK 16 years to get diagnosed), i actually did an online course lol. Yep I now have a Level 2 Food Hygiene and Safety for Catering v9 and passed it took me 1.5 hours to complete and in that time i never thought of my burning body or spasms and it was fun, and now i have a certificate to add to others. I am 68 i mean really why do i need a food hygeine certificate lol, but i used to be in catering years ago and you didnt need all these things, and now i have one, just to prove i could have one lol.

so what i am trying to say is, focus on other things. see if it helps.

when i was on my journey i gave up worrying about a diagnosis and thought well if it is MS (as my neuro thought it was but couldnt give me an answer at the time) it would finally show itself and it did.

Your body is obviously telling you something its just finding out what it is. xxx

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Hi, well yes,there certainly is something going on. You have more symptoms than I had…22 years ago, when I first began with my problems. But the 4 MRIs and 2 LPs I had many moons ago, didn’t show anything to prove anything. My demylination has only recently been found…proving PP Spinal MS. I went to a very specialist hospital in neurosciences in Liverpool…a long way from home. Neuro was brilliant. Hope your`s will be too. xxx

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Good Afternoon.

Thank you for replying, The MRI’s you have, did you have them all around the same time, and have head and spine?

I will keep pushing to get answers for sure.

Did you have years with no symptoms for you to not carrying pursuing what the problem was?

I definitely know something isn’t right with my body, just need to see the specialists and see what they suggest.

Thank you

Stacey xx

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Thank you Sue and Crazy Chick for your input. I know you guys are always here to advise, was kind of relieved that you two responded with some input.

I am going to get on with life, book some holidays for this year, whilst waiting to get to see a neurologist.

“” - feel like this is where i am slowly heading. I have been so worried for the past 4 months.

I guess i should see it has a positive, I don’t have anything sinister like a brain tumour, and if it is MS, it will eventually show itself.

Yes i have looked into FND ater my MRI came back clear. I have had all my bloods taken, all fine. So lets see what happens when i see a neurologist.

Thank You again.

Stacey

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stacey hun you will get your answers, but whilst you wait enjoy yourself as much as your problems allow you too. dont let whatever it is rob you of holidays and fun. I cant do holidays now, the thought makes me sick to be honest. Just going in a car to the local garden centres leave me in pain for days, so get in what you can just in case ok. xxxxxxxxx

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Hi I’m having same thing but no sight problems. Has a full spine. Brain next hope you find answers.