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Before diagnosis

Hi! I’m Chloe and I’m 17 years old.

I have a neurologist appointment on Wednesday. I’ve asked a few people who specialise in the area but I just would like someone’s opinion who has gone through MS what happening to me.

in 1 month I had 4 episodes. It’s basically where I looked drugged up and I can’t think at all. My speech goes slurred and my eye sight goes burry. I once became unresponsive and blacked out. My head also gets really heavy and I can’t lift it up. Now that has calmed down however I’m always feeling dizzy. On my last blood test my vit D was low. In all of my previous blood tests I’ve always had high or low white blood cells.

I also have a problem with my arm. It’s chronic pain and it’s goes very numb. It’s more in my hand but can go up my arm. I’ve had this for 2 years now.

also is there anything I should do for my neurologist appointment before hand?

hi cloe

sorry that you are having such horrid symptoms at such a young age.

in preparation for your neuro appointment try to make a time line of when your symptoms started, how long they lasted, if they changed or got worse etc.

it would be helpful for you to take someone in with you, this person can prompt you if you dry up and can make notes of what the neuro says.

have you had an MRI yet because this is probably the first test the neuro will want to try.

be warned that the diagnosis procedure is very lengthy.

are you easily able to relax because you will need some tricks -

relax your shoulders so that your shoulder blades drop.

deep breathing is excellent - in through your nose and slowly exhale through your mouth.

it could be one of a number of conditions with similar symptoms.

carole x

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Hi Carole I’ve only had a nerve conduction test done and my mum is coming with me and she knows what she wants tested for. She will encourage them haha. Also would I only have a MRI? Or would there be other tests? Thank you for replying.

it depends what the MRI shows. you may be asked to have a lumbar puncture but it’s your choice, you don’t have to. good luck carole x

So what happens if the MRI comes back clear? X

Hi Itzcloe17,

If it comes back clear, you arrive into the category of people like me who basically have experienced (and still do) some neurological symptoms (and who suspect MS) but who don’t have any diagnosis. In my case, I decided to be pro-active from the start by extensively informing myself about MS and its potential complications, and how to treat it as best as I can if one day…

Just like you, I was very deficient in Vitamin D (12). I started taking supplements immediately (first 25,000 UI per week), and now 10,000 IU per day. I do not necessarily recommend these doses however, especially if you haven’t done your homework on Vitamin D. I am going to make a blood analysis this month, and see if there is anything new on that side.

In the meanwhile, remember that knowledge is power; accept advices, but keep a critical mind to see what is the best for yourself, as only you will know what that is…if you have knowledge.

Blue Marble

It’s not a question of whether the MRI is clear really. It’s all about your neurological exam, what the neurologist thinks is wrong, plus what the tests, including the MRI say, assuming the neurologist orders one. Other tests could include lumbar puncture, but could also include other things.

From what you’ve said, it may not be MS, so go into your neurology appointment with an open mind. As Carole said, take with you a list of what has happened to you and when. Include in your list how long symptoms have lasted, also whether anything has completely cleared up and whether anything is still causing you trouble.

Let us know what happens after your appointment.

Sue

Thank you for everyone who had replied. I have my Nuro. I have one more question and that is- do they do the test on the first appointment or do they book you in for them for another time?

They will book you in for another time. They will do a physical exam on you whilst you are there. This enables them to decide what the next step will be. Let us know how you get on.

I’m back from my appointment and he isn’t sure what it is just yet but had send me to have a EEG or a EG and a Brain scan not sure if it’s a MRI or CT but will find out in the next couple of weeks

I’m back from my appointment and he isn’t sure what it is just yet but had send me to have a EEG or a EG and a Brain scan not sure if it’s a MRI or CT but will find out in the next couple of weeks

The EEG is usually a Visual Evoked Potentials test. It’s basically where they attach electrodes to various places on your head, sit you in front of a TV and show a whole load of checkerboard type patterns. The electrodes measure something related to the speed of processing the signals. It doesn’t hurt at all and is just a slightly odd experience.

The brain scan will most likely be an MRI. This can be with or without a contrast dye which shows up enhanced images. (To do this, they do a couple of scans then pull you out, stick some dye into a vein and shove you back in the scanner.) Again, an MRI isn’t painful, it can be a little bit claustrophobic and it’s noisy. But some people (me included) have been known to fall asleep in an MRI scan, it’s something to do with the noise which is a bit hypnotic. But that’s partly because I’ve had quite a lot of them. What the neurologist is looking for with the MRI is lesions in particular places in the brain. A lesion is like a scar where there’s been some damage. They can differentiate between different types of lesion and the age of them.

Once the neurologist has seen the results of these tests, together with the neurological exam s/he will have done and the verbal history you’ve given, they’ll be able to decide what is the cause of your symptoms. In particular whether or not it’s MS. So you’d expect to get another appointment with the neurologist to discuss the results of the tests.

For more information, have a look at https://www.mstrust.org.uk/a-z/diagnosis There’s also information in there about Lumbar Puncture too. Sometimes the neurologist does an LP and sometimes decides not to.

Sue

Had my EEG done and now awaiting my MRI. They have told me it’s either epilepsy or something like MS.