Hi, I was actually diagnosed last year when I was 17 I lost sight in one eye over the space of around 3 weeks in Jan 2013. March/April 2013 I had a clot in my lung. June 2013 I had legs that were hurting me a few days prior but then sudden agony and within literally hrs paralysis at T10 level (spent 3 and a half months in physio rehab but got no where so asked to be discharged to get on with my life, at this point still having a job on the table). Then I was suddenly urgently admitted to a new hospital when my new eye specialist was looking at my eyes, and the results from bloods/scans he had done. But as soon as the hospital got the notes from my local hospital they discharged me! I then met an "FND Specialist" Who picked up a few different things but never put them on the letters so makes it very difficult when I explain that actually a few of my scans have shown something its simply that a radiologist wasn't told to look at that part of scan. But either way my specialist seems to agree with me that I don't fit into what he calls typical FND as in the type of FND which has a psychological reason behind it. Next thing was feb this year where I lost my speech and also lost use or right arm, to which I was rushed in by my dr by ambulance as my dr had said to my sister he suspects its another bleed on the brain (never been told I've had a bleed on the brain before then but that's always been suspected, even with the scans!) But I was again sent to my local hospital so they didnt even do scans and discharged me onto the discharge ward where I then spent around another month and a half trying to get better but drs still saying to me "I can control all of this, I can make myself better but I have to want it, I'm the one who is choosing the life im living etc. Whilst on the discharge ward of this hospital I had my first seizures, and since then they have carried on (waiting to find out if they will be put down to FND again without testing into it, dispite the FND specialist thinking they were real epileptic seizures given family history and I had a "status seizure?!" whilst in near the same hospital he works at and was treated there for the seizure and they didn't think it was a functional issue and thought it was a real seizure! My newest symptom is my body is unable to tolerate food... puts me in agony within 5mins of a mouthful,gives me the runs and also if I drink any decent amount of liquid I'm sick fairly quickly but I was at a new dr surgery and unfortunately my old dr had forgot to hand over to never send to me my local hospital and the drs at my new surgery just wanted to try and get me sorted. The local hospital kept me in for two weeks and rehydrated me every few days but did no scans and then discharged me and told me I've got a 6-8wk wait for each scan to which they will do one scan, I will then see gastro dr at local hospital and if he feels its needed next scan will be ordered and when asked what he proposed I eat he double tapped my shoulder smiled and said good luck! currently not eaten or drank properly for 5 weeks and feel really awful for it and its being pointed out how bad I look from people who I barely even know around my village!
Is there anyone else out there with this kind of case? Also my sort of age, I feel very alone with it! Would be great to have someone to talk to about it who can relate even if there not my age but similar symptoms.