Advice for someone who is newly diagnosed with NMO
What do you wish someone had told you when you were first diagnosed?
Share your tips and insights with new community members in the comments 💚
AlexisLander Thank you for putting up this thread. Getting diagnosed with NMO is daunting not only for the patient but for the family as well especially because it's such a rare disease ...
1. It is daunting, it is okay to be scared so let your emotions flow.
2. Mental health is a part and parcel of you and your family. Nothing to be ashamed off
3. Look for community online, it is a rare disease, and the isolation will lessen once you'll get access to them.
4. Experiment with diet and see what works best for you, not what doctors or dieticians tell you. ( I am saying this cause personally the diet helped in my spasm a lot )
5. Every day in this illness is different i.e energy levels, mood, symptoms everything and this thing changes every day all the more with the weather.
7. Its a roller coaster rider, you have better days, and then you will be miserable which is again okay
7. Now most importantly YOU ARE NOT GOING TO DIE TONIGHT OR TOMORROW.
Noor (Team Member)Not right Now
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