Newly diagnosed

[Becca_687]

Hi I'm newly diagnosed (Feb 2025) and I'm looking for any kind of community.

[Panther5000]

Welcome. I have found help here as well as a place to post things I have learned. What symptoms are causing problems etc. Some just post there struggles. Hope your doc gave you the website where you can go to and learn more about FND. Accepting diagnosed and reducing stress have been essential for managing things for me. Also I the have been slowly setting up my home and life to be as simple to maintain as possible. I eventually want to do some remodeling to make cleaning easier in every room of my home. I am still trying to figure out what that looks like though.

[210272]

Welcome to this Hub, Becca_687. If you don't mind me asking, what was the basis for your diagnosis, were you told that FND is in DSM at the point of diagnosis and were you able to have an open and transparent two way conversation with the consultant who diagnosed you? I know that there are people here who have been diagnosed on the basis of normal test results alone (which shouldn't still be happening, but is) and I'm also aware that some people have had poorly delivered diagnoses eg one woman was given her FND diagnosis during a 3 minute consultation in a corridor and when she asked for further information about this condition she was told to google it. Another woman (who has the same rare condition that I had) questioned the diagnosis and was told that questioning the FND diagnosis proved that it's the right diagnosis. (It doesn't and she was also told to google it).

There is some controversy about whether or not being signposted to websites is helpful or not. Jon Stone says it's not good enough but others do seem to find it helpful. I hope your diagnostic experience was a good one and that you've been given a treatment plan and can access the services you need to give yourself a good chance of recovery

[kev60]

hi and welcome, you have come to the right place. There is a lot of help on here . Use what works for you. My story started in 2018 but not given a diagnosis for 19 months. My neurologist first thought I had a stroke that was ruled out after 3 days in hospital, but they kept going through different scenarios it was only when they sent me to neuro-physio and after getting me walking again they thought it might be FND. My wife and I were invited to a FND seminar with other patients and we were amazed at how different people were , I actually thought I was not that bad until I walked into a wall ( brain told me it was a door). I found it better to embrace what you can do and not dwell on what you can’t. It was good to get so much info from neurology and learning that FND is second most diagnosed in neurology after migraines. My FND was caused by medication (they suspect) it affected my walking,talking and memory. Walking is back to 60% normal so I can’t go out on my own as I veer right and can end up in the road. Talking is ok just lose words memory is bad lost a year of memory even forgot where I worked and who I worked with had to look up online. I will always answer any questions if I know the answers, after 7 years you learn quite a lot specially as I also have COPD, GORD and osteoarthritis of the spine and various other issues. Hope you find the help you want/need. Kevin

[Lady4]

Hi Becky and welcome.

I noticed you said your mobility took a dive, can I ask what symptoms you are experiencing? Also, what "rule in" diagnosis test did the neurologist do?