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Balo's Concentric Sclerosis - Rare Strain of MS

Hello - Newbie here - and just been diagnosed a week ago with Balo's Concentric Sclerosis - or "MS Lite" as I like to call it.

One night in August I lost my speech and cognitive skills - just like that - rushed to hospital  - but through my own bloody mindedness my speech came back, I practised typing, texting and writing and I crossed the USA on a Roadtrip just 10 days afterwards ... now firing on 90% of my cylinders . MRIs revealed one lesion/scar/flair on the left lobe - where language is stored.

Follow up MRI  in October showed a change in the Flair and the Oxford Boffins were asked for a second opinion. Sleepless nights ensued as still no diagnosis. 28/11/2017 - the day my life changed - as I was formerly diagnosed with Balo's Concentric Sclerosis. 1 scar 1 symptom , but will inevitably progress and develop a new symptom within 2 years - and then my MS Lite can be diagnosed as "MS Proper". I have bought a years supply of Vitamin D3 from the Chiltern MS Centre on the way home from the hospital .... which will last a year and take me to Oct/Nov when I will have a follow up MRI and Consultation with the Neurologist to see how things are behaving within my Brain.

So here I am still trying to take it all in - a 40 year old - fit and healthy woman who is now extremely tired - I used to be a night owl, but I am in bed by 10pm most nights since the attack. Thought I would ask for advice as my boss - who is lovely - has asked me what the workplace can do for me. Right now - not much at all - as I don't want them to monitor my every move. I have explained the next attack could be anything from imbalance, pins and needles and numbness... or my speech goes again. I still slur and stammer when tired or anxious.  What shall I tell her and my team ?

Thanks for any advice.

Charleygirl76 x

 

 

 

I have MS

Ooh Charleygirl, that’s a new one on me.

And you. I’m sure of that.

Having had a brief scan on various (normally banned) sites on the Internet, it sounds like Balos Concentric Sclerosis is very unusual and it’s trajectory is also unusual in that you can have one occurrence and get better with no repeat symptoms, or a relapsing remitting MS type, or indeed a progressive MS type of disease.

So, what happens to most of us diagnosed with MS is uncertain and definitely unpredictable, yours is even more so.

You have my sincere empathy for your diagnosis. It’s bloody unfair. And I don’t belong to the school that says you need to get your head round it and learn to live with it. In my opinion, you are entitled to a good period of moaning and shouting ‘why me’. Plus a helping of anger and sheer annoyance that this has occurred to screw up your plans for the future.

The fact is that hopefully, you will get over the current episode and not have any more. I truly hope that’s the case.

Meanwhile, you ask about how you deal with work and fatigue etc. I reckon your best option is to be very honest with your boss. You just don’t know what will happen. At the moment you can perhaps cope by going to bed early and not taking on too much. I recommend having a look at https://www.mstrust.org.uk/a-z/fatigue as managing fatigue is one of the cornerstones of dealing with any kind of MS. Ultimately, if you have greater problems with work, you can look up Access to Work who should be able to help you with difficulties.

The other thing I would do is to try and get your GP to learn as much as they can about it, because that way they can help you.

The forum here will I’m sure collectively do what they can, when you have questions, ask them here or on Everyday Living. We will try to help.

Sue

Thank you Sue.
Your words are a comfort.
Sorry for the late reply. Do you not get email notification alerts when someone replies to your post?
I was just curious to see if I have a reply - and spotted I had.

Thank you again.
Charley x

I have MS

Once upon a time we got notification of replies to our posts, but no longer. So it’s a case of just looking in every now and then. 

I do hope you’re doing OK, it does take time to get your head sorted with a diagnosis. So be kind to yourself, give it time and rest. 

Sue