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Symptoms without a diagnosis

Happy happy, joy joy - I have been diagnosed with ocular neuritis and 'demylelinization disease.'  In the course of one week I have gone from a peaceful existence to chaos.  One doctor had me dead and buried within three years!!!  Multiple doctors are sympathetic but extremely non-specific.  I want to control, to hwatever extent possible, my understanding of what I might have and how to ameliorate the symptoms.
I am having some blindness in my left eye as well as pain (like an ice cream headache) behind that orbital socket.
There are some reflective lesions on my MRI (I do not know how many or where they are located-- yet)
After crying for four days I am now getting off my butt and becoming proactive --any suggestions?  Any ideas would be welcomed!



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393986 tn?1303825975
Its a grieving process but am so glad to hear your taking a proactive approach to this. Like Michael said stay and be a friend, post questions, concerns or even vent to us.  We understand. Welcome, we are like family here...

Many Hugs,

Spazie Ada
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398059 tn?1447945633
We understand your joy.  We are all sorry about you joyous proclamations.

Stick around and be our friend.  There is so much information and a lot to learn.  Keep reading and sharing and asking questions.
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Avatar universal
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Avatar universal
Hi. You've come to the right place. Based on what you describe, it seems as if MS is your diagnosis. Optic neuritis is very often the first symptom, and if your MRI shows demyelination, this gives further evidence. However, other disorders can cause these symptoms. What you need is a complete evaluation by an MS specialist (not merely a neurologist), further tests, and rule-out blood work.

If everything boils down to MS, then you need to face that hurdle. But stop crying, 'cause it's not a death sentence. Many people here do very well indeed. It's better to know what's wrong, since then you can begin treatment.

Why not hang in here? We're a friendly and knowledgeable bunch and we'll do our best for you. Why not tell us a bit more about yourself?

ess
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