FND Diagnosis at 19, feeling very alone

[60reevey]

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.

Many thanks,

Yasmin

[cathys20]

Dear Yasmin, I am so very sorry. Where do you live? Do you have a strong support system? There are many people like you. Is it fnd? I don't know if anyone knows what we all have. I do know that I do not have a conversion disorder but that after 15 years of similar things as you, not all, but many, have been diagnosed with it 2 months ago. And yes, once they think that is it, everything else is pushed under the rug. I am so very sorry. I think there is something medically wrong with all of us. You are not alone, there are thousands that I know of, so think of how many we don't know of. Our brains are miss communicateing with our bodies. What has caused this I have no idea. I only know what mine is not, CD. Know that you are not alone and others share your frustration and lack of understanding in the medical community. It is just so sad. Feel free to join the facebook page. Many supportive people there. Also, feel free to contact me if you would like. God Bless, Cathy

[60reevey in reply to cathys20]

Hi Cathy, thanks for your reply! I'm in the UK, Northamptonshire. I have a very strong support system (family somewhat) but friends a bunch! Yeah its FND (at the moment according to my "fnd" specialist in Oxford, until we can find another answer (thats genuinely his response!)). It definitely feels as though no one knows or definitely understands so we are fobbed off alot! The fact the things are pushed under the rug is so wrong and I'm so fed up of it why is a neurologist happy to treat migraines yet FND they simply dont care and are rude. I am very much in agreement with you that there is definitely something wrong they just dont have the knowledge to understand it/the technology! I have never met another person with it who lives near me, and other than on these threads/fb page but never spoken to anyone. I've never been given a CD disorder and I'm eternally greatful of that however I do feel that some drs think FND is the new CD! I have been a member of the fb page for a while and love seeing the updates.

Thanks again for your reply!

Yasmin

[Marie28]

I'm so sorry to hear your story, but it's sadly the normal way we are treated, it's 5 years for me I was diagnosis in April 2010, I've had many diagnosis along the way, most by rude drs who haven't a bloody clue! Told I'm doing it to myself in some way! Or it my Brian playing tricks on me! So home and sort yourself out!! Have a read of neurosymptoms.org it's a brilliant website, also please join the Facebook group, their are many people like u, u are not alone! Their will be someone around day or night to comfort u, listen and answer some question u may have!! If u not happy with your drs change to another dr, depending on were u live, their are FND specialist, dr stone or dr mark Edwards in Edinburgh, u will find video of them speaking about FND on the Facebook, FNDhope.org

Remember u are not alone! Thinking of u Marie xx

[60reevey in reply to Marie28]

Hi, thanks for replying. It shouldnt be the normal in that thats the way we are treated, someone with MS wouldnt be treated the same. I'm sorry you have also had a rubbish time with drs and specialists! I have read neurosymptoms website yet still find myself in two minds about FND (although I feel that most people with this diagnosis always will be until its understood more and more accepted) I've never thought about posting asking questions etc on fb for not wanting it to come up on my wall. I was extremely happy with my Dr, my Dr was absolutely amazing in understanding and was also happy to try absolutely anything that I came across or thought might help, mainly based on relieving some symptoms and if she didnt agree it wasnt just a no, it was a no with an explanation! My new Drs didnt even read my shortened version of notes my GP made for them! There is a "specialist" slightly closer to me MR David Henerson Slater. Edinburgh is slightly to far for me to travel! I have checked out the videos and i'm on the fb page

Thanks for responding!

Yasmin

[cathys20 in reply to 60reevey]

Yasmin, Cathy again. I just wanted to reply about something you posted in your last responce. I too was afraid to post on the fnd. facebook site that my home page people would see. They don't see it. The fnd sites are private and they do not cross over. Thought you might want to know that, so you could feel free to post. Also, like you I had a great Dr. for 13 years who diagnosed my with idiopathic dystonia. He was awesome. KNew there was something wrong with me and worked from there. Then he leaves his practice, thanks to our ever unpopular Obama Care. Another story in itself. I lose my great Dr. First time I get real sick with symptoms the new Dr. freaks and starts sending me all over the place. This is after having this for 15 years. Within 3 months I have a cd diagnosis, which I don't have. ugh....So long story short, I have a new neuro, asked her this last week to take it off of my chart, as I have been told by 3 psychiatrists in the past that I don't have CD. So, just yesterday it came off the records and went back on as paroxysmal dystonia and possibly a functional neurological disorder. For now, a victory, one I can live with. She is listening and that is all I can ask for at this time. I believe we have to be our best activists. hopefully somewhere along this all the Dr.s will figure something else out about us. God Bless, Cathy