New to this Disorder

Hi My name is Maggi. I was recently diagnosed with FND. Currently I am being treated with sinamet and benadryl..I am having symptoms of blurry vision, hand tremoring, hands don't function, face tremoring, difficultly swallowing and slurred speech. Currently I am out of work and school and been trying to cope. I have tried meditation and relaxation techniques but it's not helping. I don't know if I am in denial of this whole thing..just would like to be independent and better. Trying to stay positive but its hard when PND gets me frustrated. My family doesn't quite understand it. Anyone have any good coping mechanisms? Also any advice on how to go back to work? How do you stay positive? I had told the Neurologist I would like to go back when my symptoms are controlled.

2 Replies

  • Hey Maggi, I'm David nice to unofficially meet you! I know exactly how you feel. When I was first diagnosed, I felt like no one believed me, they either thought I was crazy or having alcohol withdrawals. Needless to say that was not the case. I was depressed and frustrated when they told me what was going on. My symptoms include seizures, tremors, and stuttering. I currently live by myself and I'm out of work for at least 6 months. They took my license and everything. I don't want to have to rely on everyone to get through everyday and I try not too but sometimes it does help when you have a friend there for you. My family tries to understand but they wont ever know what it feels like. For me I try to keep my body and mind occupied. Even though I'm not supposed to work out I still try and go to the gym, I just have someone watch me while I work out. I applied for several data entry jobs online. I know it sounds boring but until I can get released to go back to my real job I need to do something. I would say try to find a therapist or someone you can talk to about it. I know its easier said than done but you have to start somewhere. What are your limitations?

  • Hi Maggi! Sorry to hear this. I have recently been diagnosed with FND with your symptoms and some more including Conversion Disorder. If I can pass on some help, the biggest one would be to when sleeping at night turn the fan on which cools my body down even in winter from triggering symptoms. I have found this to help. It doesnt eliminate all together the symptoms but it does help I find. Also NEVER feel different to others and never accept think positive as it doesnt help. Those who dont understand FND or MS just dont get it! . A good professional crowd to help is the MS Society. They helped me with information and extremely kind. But your first help is here Maggi! Us that have FND, we get it and we will be more than happy to help you. Also I carry a diary especially for my symptoms and everytime I have twitch, spacticity or whatever, I write it down. Each week I review it and see what I was doing. Then in 6 months il give it to a research group or Neuro to examine it. It all helps and will help you to identify how you can eliminate attacks or pain or discomfort. You probably wont, however, doing something is better than nothing. Be safe! Shaun

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