Sunday, 15 December 2013


The waiting game is killing me right now. I’m the person who always prefers the known (as bad as it can be) instead of unknown uncertainty. If you know exactly who your enemy is, you can face it. Lurking around in the dark is much harder. 

Doctors had rounded possibilities for us down to two options which is already a good thing. So ADEM or multiple sclerosis? While doctors are counting oligloclonal bands....  

Not to abuse my own nails I abused internet, hour after hour, reading, reading and reading some more. I learned a lot, I must admit.

First of all – nobody knows anything, it’s still not far away from finding a black cat in a dark room....  ADEM or MS, whatsoever.

Secondly, if it’s ADEM, future is still under a big question mark as according to latest studies, over a half of children with ADEM develop MS later. To make it even more certain, girls are more likely to develop MS than boys. 

Okay, okay, I'm not a neurologist, but I'm a mother. I think this diagram is very good for better understanding about initial diagnosis. 

In our case, there hadn’t been inflammatory markers – all bloodwork was fine. Even perfect. So – not typical for ADEM. She is 11yo, so slightly into MS area. Must add that she is quite tall as well - right now 1.71 m. Not obese. Weight 54 kg. There is research results that obese girls have higher risk of MS, so that might indicate more towards ADEM.

Our girl’s test shoved unilateral optic neuritis. Typical for MS. 

Lesions are periventricular, as far as I can read the MRI, typical so called Dawson's Fingers. Another indicator for MS. 

(The full article is here if you are interested.) 

So all in all while still waiting for CSF results and follow up MRI, I have made my mind up that MS is the combination of letters which we must learn to live with sooner or later. 

Anyway, life goes on. 

Christmas wreath must be made and while left hand is still significantly weaker than the right one, wreath can be made. Sadly we must avoid holy as it is protected here but box is in abundance everywhers.

Not a perfect one, but still – first little job for my little one after the hospital. Schoolwork starts tomorrow....

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