Angry & Frustrated

[wbblake1]

Am frustrated, I've been admitted in the hospital four times in the last six months for declining health. Had episodes of non-epileptic seizures and autonomic hypotension and hypertension at home, on the job, in the ER plus on the hospital wards witnessed by paramedics, doctors and nurses. Had battery of seizures protocol, EEG and EKG monitoring. No one can give a correct diagnosis for what's going, while I continually have pain, tingling and numbness. Know and feel what everyone's going through, glad joined the community for hope and support

[Leesaloo]

Hi, like you I was in constant pain, non epileptic seizures, shaking of legs, unable to walk so crawled around home. 17 months of negativity from professionals, all ecg etc showed nothing wrong, treated repeatedly for anxiety and depression, tablets by the bucketful, side effects made me so ill. Finally got to professor Edwards in Tooting's London and diagnosed straight away with FND. Those 17 months were hell, ignored, treated as nothing wrong, not knowing what was wrong with me, I did become depressed and suicidal. Luckily for me the professor put me on waiting list for intensive rehabilitation for 1 month at queens square nuerology last December. This kept me going and hopeful. I read everything I could find on FND and progressed in rehabilitation. Now been home 2 months and put everything I've learned into practice. I'm progressing slowly but have learned as soon as I overdo any thing mentally or physically my symptoms return. Although there is light at the end of the tunnel it's going to take longer then I'd hoped to learn although not healed if I can just pace myself and not get fatigued I can improve. If I overdo it the pain becomes overwhelming, and the spasms, leg dragging all return. It's all about managing the fatigue. My speech is the first sign I've overdone it, starts slurring and hard to think. There is hope it's just getting there. Now 3 years on from first symptoms I have a small part of my life back it's more then I thought I would ever have. Hope this will give you hope too. Hugs 🤗

[Onedge]

Hi there

Just wanted to know what it was like being admitted to hospital in Queens square and what did your rehabilitation consist of?

So pleased your are on the mend x

[Leesaloo in reply to Onedge]

It was very challenging to get to the hospital, the travelling, noises, movement. I think if it had been a year before I wouldn't have been able to get there at all. My symptoms had eased on there own in the 6 months running up to my admission why that was I don't know, I had stopped all medication tramadol and Diazepan as I wouldn't be accepted for the course while on lots of medication. I cannot fault the 4 weeks, the team you work with, the ward, everyone there was helpful in so many ways. They helped me to understand that when I get tired mentally or physically my symptoms return and my seizures, I've now been seizures free since I went into rehabilitation last December, I have to be very careful and monitor my own energy levels which has become easier to do as I don't want anymore seizures as I can now drive again after 3 months seizures free. This is a godsend as I'm isolated where I live. One of the best techniques I was shown was my left leg dragged and foot turned in. I put my heels down first when I walk straight away this took all of that away. Something so simple was sooo effective. Unbelievable. Some patients like me went in in a wheelchair we all left walking bar one lady, her legs just wouldn't respond but as she hadn't spoke for 9 months and they had her talking in two weeks she was over the moon. I know how lucky I am too get on this course and am so grateful I just hope others get the same chance as I have. On the ward they are doing so much to raise awareness of FND or fns as they call it. The course is tailored to suit each individual which is why it is so helpful and obviously why the waiting time is so long. There are only 2 in the whole country that offer this. Hope this helps you. 😊

[Onedge]

It was lovely hearing from you and to find a person who is so enthusiastic and positive about the treatment they received.

How long had u been on the tramasol and diazepam?

How did they diagnose u ?