Another sort of FND

Hi all its me again ( Kevin ).  I thought I would share with you another frightening experience I had that turned out to be another case of FND.  It was three a clock in the morning, I was in bed at home, and felt strange as in had headache, blurred vision, couldn’t move my left arm and couldn’t speak.  Was this a stroke or something to do with autonomic vaso- vagal? I had no idea.  Anyway I was taken to Southmead A&E.  The first nurse I saw said I had drooping mouth and other symptoms made it look like I had a stroke.  The doctor came round and we went through everything again.  He also said visual symptoms and symptoms I had told him about, were clear I had, had a stroke. After bloods and a CT head scan,  I was subsequently admitted to a Neuro ward.  I had a clear weaknesses on my left side, couldn’t grip with my hand and no strength in my leg, and even now I still have that weakness on left side. This means that when I pass out, whether from POTS, vaso-vagal or FND, nine times out of ten fall to my left, mainly injuring that side. Anyway, after admission  I was told I would need further tests, MRI brain scan, carotid ultra sound scan, more blood tests and half hourly ops over night.  As time went on the headache and facial drooping started to improve but the left sided weakness continued.  I was told by doctor this could last for a few weeks and then start to improve and I would need physio to help facilitate this.  The next day, following the carotid neck and MRI scans, the Neuro consultant came round with the results.  There was no sign of bleeding on brain and no obvious brain damage. The neck scan showed I only had small blockage, 40-50% in the carotid artery so after some consideration he said he didn’t think I had a stroke after all, though he couldn’t be certain as it could have been a longer lasting TIA due to sticky blood as my diabetes was out of control( caused by steroids for the autonomic dysfunction.)  After seeing the dietician, diabetic nurse and physio, I was allowed home.  I was prescribed Clopidogrel, just in case!  At home I continued with physio to try to strengthen my left side.  In a neuro follow up appointment a month later, the consultant started to explain what it could have been, if not a stroke. A spasm ( reversible cerebrovasoconstriction syndrome) within the small vessels in the brain was one idea or maybe functional hemispheres.  Basically, he had no idea! He then started chatting about FND which we had never heard about, gave me the name of a web site I could look at which explains things in payments terms and discharged me. Well this web site was certainly an eye opener for me, I had no idea your mind, nervous system could cause so many symptoms from a stroke right the way through to some of my passing out, incredible. As it says on website it is not your fault you cannot control it, no matter how much you try, it’s not put on it is real. I have seen plenty of doctors, consultants and the like who admit they actually know very little about it or why it happens, though that doesn’t help me or people like me. Say in future I have these symptoms again what do I do? Call an ambulance as you would normally or do you assume it’s FND?Advice from the hospital is to ring 999 immediately as this is potentially life threatening, it could be a full blown stroke if I don’t go to hospital I could die or have serious brain damage. My advice is the same, play it safe you can’t afford to play with your life,( “ahem” interrupts my wife, as I often refuse to practice what I preach) and if a doctor, nurse or consultant can’t tell without an MRI scan, this tells you how real the symptoms are so you as a patient have no way of knowing which is which. There is definitely a need for research into this to be done but unfortunately there is no funding for FND, all the money is spent on the big diseases like cancer etc. There are hundreds, thousands, maybe millions world wide who suffer from some sort of FND but nothing seems to get done, we’re all left frightened and alone, this is why these groups are so vital to us all who suffer FND in whatever form. Please come along to our next meeting on August 20th venue yet to be decided, but we will let you know in plenty of time. If you do plan on coming please let us know so we can let venue know numbers. We generally book a venue where we can have meal. It’s very light hearted but will be a help to both patients and carers.  Please do bring carers with you as there are plenty there who can share their experiences and troubles.  If you don’t want to eat that’s fine but can you let us know either way as we will all need somewhere to sit. We have both wheelchair and ambulant disabled, all will be welcome. Also if like me you have partly FND and diagnosed organic problems it doesn’t matter,  for me thirty % is FND and 70% organic, both effect me daily and pose exactly the same challenges. Look forward to seeing you all at the next meeting, please come along. Until then all take care of yourselves. If your interested name of website is neurosymptons.org all lower case.  

 

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