So you’ve got a diagnosis of Functional Neurological Disorder! GREAT – but how quickly, that elation diminishes- well it did for me! I soon had many more questions than when my array of symptoms was initially being worked out.
So there I was, I had a diagnosis, that even my initial neurologist didn’t know much about. She sent me home with the name of a website, medications and lots of referrals. I was paralysed down my right side, unable to use my right hand, loss of balance finding it dreadfully hard to walk even small areas without falling, that was just the tip of the iceberg of what was happening to me! I was totally needing the assistance of my husband…..BUT, I had to wait weeks for my referrals to let the only known treatments begin…..and those weeks seemed to last a lifetime! The treatments did finally begin and yes, I have progressed well but I am still left with bouts of debilitating symptoms that would floor even the strongest of people.
Sorry to ramble, but this is a similar journey for so many people also affected with FND. It’s very frustrating, scary and lonely but finding a GP and neurologist that you can trust, so that you can keep an ongoing relationship with over time is so very important.
This is why, I’ve decided to go public….very public on my healing journey with FND. Everyday, I am involved in my treatments that include NeuroPhysio, OT, speech and psychological therapies. If that’s not enough to concentrate on, I am also beginning to create and launch what will be a globally known research foundation with a connected healing centre. I want to bring thorough research for more reliable ways, firstly for making the FND diagnosis. But I want to then, have a better platform for educating neurologists and general practitioners around the world about how to educate and connect appropriate treatments to suit individual patients. With a better platform for medical doctors, I feel that a much better awareness and support system will be able to be put into play for patients and their carers. There are a number of patient support groups popping up across social media now and I believe these are wonderful links to help people connect with others that are living with similar but different issues with the same disorder.
However, for me to be able to do this I need a bigger support network. Across, the globe there have been sports stars and celebrities, who have succumbed to debilitating diseases. They have helped awareness and research foundations for their particular medical conditions, set up amazing platforms. I don’t have that profile….but I do have the determination because I am a survivor of this condition and with your help out there, I know we can build people power in bringing what so many that battle FND need for healing health and life.
If you haven’t connected on social media, please do so and let’s beat this beast of a disorder;
Walking & Talking for ME and YOU,
3 thoughts on “So You Have A Diagnosis of FND……WHAT’S NEXT ?”
I am still waiting to get a final diagnosis. I have seen 4 neurologists in the past 3 months; 2 stated I did not have MS, 1 stated I might, and 1 stated I definitely have MS. The last neurologist I saw was a MS Specialist at Vanderbilt. He said I did not have MS. What is so frustrating is that each one is looking at the same MRI’S, CSF and EMG.
So, I am trying to find other neurological disorders that can mimic MS and found this information.
LikeLiked by 1 person
Sorry for the long delay. I have moved my website and I would really like to help you find a way through your journey.
My new site is http://www.thebarefootgoddessau.com send me a email and mention it’s Donna from the old goddess site and I will definitely see what I can do to help you .
FND is such a debilitating disorder with still little information out in the real world. It took me over 8 years to get my diagnosis so I know all the different avenues that you may need to go down .
Looking forward to chatting
I think I forgot to mention new site address – http://www.thebarefootgoddessau.com