A letter from Dr William Stern informing me that I’ve to see a neuropsychologist to discuss FND. He’s a lovely, compassionate neurologist at Guy’s and St Thomas hospital, London.
Suggested audio: Survival by Eminem (explicit)
“Now mount up, jump in the saddle
This is it—it’s what you eat, sleep, piss and shit
Live, breathe, your whole existence just consists of this
Refuse to quit, fuse is lit, can’t defuse the wick
If I don’t do this music shit, I’ll lose my shit”
One day enough I was sat with my dad in the coffee chain AMT located in the heart of St Thomas’ Hospital in the tourism hub of Westminster, London. Suddenly I felt a weird “mild electric shock” down my left leg. I switched off my spinal cord stimulator (right femoral and inguinal nerve damage from angiography in 1996). It made no difference. I lost control of myself and bombed to Pain Management to test my SCS and then made an appointment to see the specialist who implanted it in case the leads had migrated. Everything was in place. Mr S. Thompson was concerned about MS which of course scared me to death and had my immediate family worried sick.
Soon an urgent appointment with my neurologist arrived and I tried my best to describe the strangest feelings since my brain haemorrhage. Erratic pins and needles everywhere, bad memory and concentration, weird non epileptic seizures and numbness here and there. I wasn’t aware of other classic symptoms because I’m an annoying case with crossover symptoms. I was referred to a lady who specialised in multiple sclerosis and she strongly felt it wasn’t, thankfully. I was declined the diagnostic lumbar puncture however so I’m 5% a bit scared! Then I went back to Mr Williams and he informed me about the possibility of the unfortunate development of functional neurological disorder. Oh great, I thought, now what!?
I was referred to a really sympathetic neuropsychologist to further discuss the condition. Dr Biba Stanton specialises in functional disorders and I was in with her for over an hour. Life’s stress may well be have been the cause. Coping with various long term conditions since my teens, the trauma and upset of losing my job which still greatly affects me and a few other things not needed to be mentioned here. My brain is in almost constant flight mode and hyper-reactive to everything. I was given the formal diagnosis, some medication was increased to help with exacerbation of my BPD problems and an invitation for myself and my husband to attend an in-depth conference at King’s College Hospital. It was an excellent help and support where we were given various paperwork, coffee and biscuits and steered to the informative website FND Hope UK.
It’s great to have a diagnosis and assurance I’m not going mad plus being a neuropsychological condition, although the crazy symptoms can be scary, there is no structural deficit going on. I have to live life in chunks at a time sometimes instead of the classic one day at a time. Mentally and physically it’s such a pain and I often trigger myself but thankfully my husband, family and friends understand.
Anyone else suffering from FND will all have a story to share and to realise we’re not alone in this helps very much. There are great Facebook pages/groups to explore.
Today is terrible but I’m rolling with it as they say. This Kindle mum bought me has huge lettering so it’s easy to type up today’s thoughts. I couldn’t switch off and relax because of ideas but now they’re published, it’s time to watch the fourth in the Turkish D@bbe series (below). Great found-footage paranormal movie, well worth watching! Oh, and coffee time.
© Copyright: Sharon Lawson™