CIS? - Looking for input

New diagnosis and before diagnosis
1

Hello, I’m looking for some input from the been there done that.

I am a 28 year old Caucasian woman from Canada. In good regular health.

Just about 4 weeks ago I had a lot of weakness and tingling in my hand and leg and face - all on the right side. A large portion of it turned numbness. I had a mild headache but nothing too serious. Since it was affecting my face I felt like I was almost tripping over my tongue and my husband brought me to the ER in fear of a TIA or stroke. I also had blurred vision and a very spacey feeling - disoriented and dizzy not spinning but felt not balanced.

I often have migraines. They follow a very predictable pattern (and usually right around when my AF is due) my vision will tunnel, if I’m writing all of a sudden I won’t be able to see the tip of my pen and I feel very strange, not unwell but not right. Within minutes all of the vision out of one eye will be gone, only for a few minutes. As it returns I get the flashing lights in one eye for maybe 10 minutes. Once the flashes subside the extreme head pain comes on and lasts around 6 hours.

What I experienced was similar to the first stage of the migraine where I am disoriented, my balance is off but Im not dizzy. But this was a permanent state.

They did a CT scan and EKG and confirmed I did not have a stroke but sent an urgent referral to the stroke clinic here because of the symptoms and my age they wanted to rule out TIA.

The stroke clinic had me assigned to a neurologist (who specialises in strokes not MS) and he sent me for an urgent MRI and MRI of my head and cervical spine. I began to experience some extreme fatigue this week too - I am a mom of 2 special needs kids, I’m a marathon runner - I know how to push past fatigue when I need to - and I just.could.not. I could not keep my eyes open this was a whole new level of exhaustion. I saw him for results the following week, there were no lesions present at all. Meanwhile I am still feeling all out of sorts, lots of shooting like tingles. He repeats the neuro exam - still presenting with a lot of weakness all on the right side, blurred vision, tingles and numbness are constant, my hand is essentially non-functional in the ways my dominant hand should be. He refers me for an EEG to rule out seizure activity and and EMG to do a nerve conduction study.

So another 5 days goes by and I’m feeling quite a bit better, not as disoriented I’m not feeling as much in a brain fog as I was, my hand is a little more funtcional though still a lot of tingling, vision is off and on blurred, fatigue improved a little bit. Then Thursday night last week I was so tired. So unbelievably tired like I’ve never been before - I could not get myself up in the morning to bring my kids to school and even taking the awful mom route out and keeping them home from school I fell asleep so much I forgot to call them in absent to two of their schools (I have three kids). I slept almost the entire day. Walking from my bedroom to the bonus room so a matter of 30 feet and only 3 stairs and I was exhausted and napped on the couch.

I was like this for all of Saturday too. I can’t even tell you how much the shooting tingling issue was bothering me because I just wasn’t awake.

Sunday I had an intense intense eye pain. It hurt to move my eye at all, my vision was so terrible in that eye - I had Lasik last year and my vision is normally incredibly sharp - I couldn’t see the light switches on the wall out of that eye it was so blurred. The pain intense and the exhaustion ever present.

I emailed my neuro’s assistant that night to ask for an appointment to find a way to manage the symptoms while waiting to figure out the underlying cause. Things are significantly worse.

In the interim I went to the eye dr for them to check my overall eye health and of course now my vision had returned and the pain significantly down (so not optic neuritis), the vision issues have been so intermittent.

The neuro has requested an MRI of my spine now (why that wasn’t done initially I don’t know) and the optometrist has asked them to repeat the MRI of my brain and smaller slices to focus on the orbital sockets. So I’m waiting for this phone call to book in the MRI (the last one he requested took only 2 days and still no phone call today!)

Both the optometrist and the neurologist have said if my symptoms change to go to the ER immediately (I assume because nerve damage on the optic nerve could lead to blindness so that would need to be addressed immediately)

The plan following these tests was to repeat the MRIs in 6 months to check for lesions. He has said that based on the scans and no lesions present at this time the chances of CDMS were 20% so quite low. If the EEG and EGM come back with no conclusive evidence then this puts this episode in the CIS range which is why I’m here.

Today - the shooting sensations have been intense. Painful sometimes (while driving I felt them from shoulder through my hand and from my hip down to the bottom of my feet particularly in my knee) all in the right side still. Its been so intense, the fatigue is incredible still - I managed to get my kids to school but came home to nap and even still I feel like I’ve been hit by a bus.

Everything I read still leads me back to MS, I feel like what else can it be at this point? But then are these symptoms the way I’ve described them what you have experienced because I also can’t find articles or blogs or forum posts describing exactly what I’m feeling either so I thought then maybe I should post and see what the people immersed in this life think.

I’m on day 24. When will this end. Why does it feel like its gotten worse. Why is it intermittent and WHY has nothing appeared on my MRI?

I will take any input, opinion or advice at this point!

2

hi canada

it doesn’t sound like a typical ms path that you’re on.

just keep on insisting that you get a diagnosis and help.

good luck

(by no means an expert)

carole x

3

Hiya Canada,

This is only a possibility that may be worth investigating.

As Carole says it does not look typical MS and yes; MS does cause headaches but they can be far worse and constant with a complaint called Hughes Syndrome (HS) or Sticky-Blood see http://aps-support.org.uk

Referring to your MRI I will copy an email I received from Karen; she who must be obeyed as far as MRI’s are concerned.

The last T2 FLAIR scan I did of my brain used 70 slices (on a 3T scanner). The one I had done today - 13 (on a 1.5T scanner). THIRTEEN. THIRTEEN!!!

Thankfully I wrote it out the voxels/T2 reply in Word before posting - to avoid the dreaded time-out! So here it is…

A MRI image typically consists of voxels (3D pixels). Slice thickness is one dimension (on the z-axis if you think of maths). The images you see on the CD show you the other two dimensions (on the x- and y-axes). You can set the voxel size to anything you want, in any dimension; all that happens is that it changes the time the scan takes to run (and therefore, of course, how much it costs). The smallest voxel size used in everyday MRI is typically 1mm x 1mm x 1mm. The “off the shelf” scan that I used to use for this size of voxel had 176 slices. The voxels (and slices) cover the whole brain irrespective of what the voxel size is – nothing is missed out (but see later).

If a standard T2 sequence is used for the scan, white matter gives off a poor signal and shows up as dark whereas lesions (which are full of fluid) give a strong signal and show up as bright.

However, the brightness of a voxel depends on the average of the response from the matter represented by that voxel. So a voxel that is 1mm x 1mm x 4mm will show the signal generated by all matter located in that 4mm3 cube. That is, if the voxel only contains white matter it will be dark in the image, if it only contains fluid it will be bright, but if it contains a mix of white matter and fluid it will look somewhere between dark and bright, depending on the proportion of the different matter types.

So if you have a large voxel (say 4x4x4) and a small lesion (say 1x1x1), the overall signal in the voxel will only be slightly higher than one without a lesion (and therefore look only slightly brighter, and therefore may be overlooked). [NB Small lesions would also not always be completely contained within one large voxel – it is more likely that it would be partially in at least two. So this makes it worse.]

But if you have small voxels and a large lesion, then you will get several very bright voxels (where the matter is all fluid), some intermediate voxels (where there is a mix of fluid and white matter), and some vaguely brighter voxels (that contain predominantly white matter).

In other words, small voxels are much better for detecting lesions.

So, can lesions be missed if you use thick slices? Basically, yes. It is entirely feasible. However, they would have to be much smaller than the slice thickness because if they are closer in size, they would contribute sufficient signal to make the voxels significantly brighter than the surrounding voxels and would (should!) be picked up by a decent radiologist. Saying that, it is possible that it might be missed if a small lesion, by chance, spans lots of voxels (e.g. if it is centred on where four voxels meet on that slice) and the signal is lost by the averaging with the white matter signal in those voxels.

However, there are new “pulse sequences” (the settings that programme the scanner) that are particularly sensitive to fluid. If you use one of these rather than a standard T2 sequence, you will be able to use bigger voxels and still be able to detect lesions relatively easily. And the power of the scanner makes a big difference too. A 3T scanner is much better than a 1.5T scanner.

So, if a hospital has a 1.5T scanner and a neuro is ordering a standard T2 scan, then he should be asking for a high resolution (i.e. small voxel size).

If the hospital has a 3T scanner and the neuro is ordering a FLAIR or another new type of pulse sequence that’s good for fluid, then he can get away with a lower resolution.

[NB A related point: it is possible to set gaps between slices. For example, the MRI may capture signal from 0-4mm, 8-12mm, 16-20mm etc rather than 0-4mm, 4-8mm, 8-12mm etc. This would DEFINITELY miss lesions!]

So the trick to not missing lesions is not so much about the number of slices, but about the voxel size, whether or not the slices cover the whole brain without any gaps, the power of the scanner and the choice of pulse sequence

Me again; so you see it is not only important the number of slices but the voxel and the resolution of the scanner; if possible a 3T (Tesla).

If you want to know about the brain and MRI’s see A brief beginner's guide to the brain and MRI - New diagnosis and before diagnosis - MS Society UK | Forum Karen’s guide.

George

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4

Hi George,

There is some great info there.

5

Thank you all for the info!

I admit the information regarding the MRI technology is way above my head - we also have zero control over what kind of MRI is used or when unfortunately.

My neurologist has referred me for another MRI of my cervical spine and thoracic spine that I will be going for in just over 2 weeks, apparently the last MRI was just of the brain.

I’ve had just constant headaches with my vision blurriness in the one eye being intermittant still, the fatigue still just all consuming. Not the kind of fatigue I can just fight through at all.

One thing that I have definitely identified - is the tingling and numbness is brought on very specifically. Anytime I do something physical (I’ve been trying to force myself to go for walks, I’m way too tired to truly work out but I’m hoping that just a bit of walking would be good for me? - I used to be a runner, a marathon runner so I need to do something!) within only a few minutes 5 minutes I’d say I start to get the shooting tingles - like an electric shock that runs through me, and if I persist my hand/arm goes numb as well as my foot/leg along with a lot of weakness.

When I do go for a walk - I haven’t made it to the 30 minutes yet - or do some light housework or really absolutely anything that makes me have even a little bit of an elevated heart rate or temperature - I hit a serious wall. I feel like I MUST lie down, I get that disoriented spacey (almost dizzy or buzzed) feeling, and it does not go away with usually falling asleep. Maybe its that I don’t even know I’m falling asleep I just seem to need to sleep so badly the choice is taken from me.

I also notice the shooting tingle sensation every single time I’m driving. It is something about that position that sends my nerves into overdrive.

It certainly seems positional, and brought on by any kind of stress I put on my body. Which makes me think something like systemic inflammation and perhaps something like chronic lyme disease rather then MS?

I’m really not sure what to think but I’m on week 5 now of this and honestly I don’t care what it actually is I just wish that someone would tell me what I need to do or take to manage these symptoms so I can go back to my life!