Hi everyone. I hope that you are all well and thriving. Please could I ask for some help in with research into causal factors of FND?
In Nov 16 developed Serotonin Syndrome (SS) after being injected with pethadine post-op. (This also happened after a previous op, 6 years earlier, but the medical team missed my warning.) Immediately after my BP shot up to 230/180. I was rushed to ICU where my heart & breathing stopped (I was revived, obviously!)
Myclonus (both hands and legs) started immediately and has continued, worsening gradually, ever since. My 'offending' meds were changed as they had rather belatedly recognised the danger.
I had a 2nd heart attack and revival 2 days later.
So instead of a 'relatively minor procedure' & 4 days in hospital, I was 11 days in ICU and another 17 days in a ward, being discharged with no proper support (or a diagnosis) on 23rd Dec.
On 2 Jan the consultant neurologist confirmed his immediate diagnosis as SS due to the clash (between pethadine and the meds that I had taken for 25+ years). I hadn't been told to discontinue these meds before the op. He also stated as a firm diagnosis that the SS had developed into Lance Adams Syndrome, which is rare and is described (roughly) as myclonus after a near-'death' experience.
He later changed his mind about the LAS (after my solicitor wrote to the hospital to ask for copies of my medical notes). At the end of Jan he changed his mind, back-pedalling furiously & suggested that I simply had a 'neurological condition' that a MDT could address.
He did nothing whatsoever to teat m save for telling my GP in June (but not me directly!) that he didn't want to treat me any more.
In July, (again via my GP) he referred me to a consultant neurologist in St George's, London, who holds a clinic Dublin once a month (where this happened). I saw him in late July and he immediately diagnosed my condition as FND.
So after eight months of my regular falling, walking only with frames or using a wheelchair, shaking uncontrollably, stuttering, suffering anxiety attacks and a number of other unpleasant symptoms, I finally had a firm diagnosis.
Then I learned that, apparently, there is no neurologist in Ireland who can treat FND and that I would have to travel to the UK.
The original neurologist later claimed that he had diagnosed FND (which was news to me as neither of his reports mentioned FND or similar.) If he had known in Jan that it was FND, but that he couldn't treat it, why then did he wait until July before recommending someone who could? Grrr! He also 'forgot' (I am being generous) to sign a 'Treatment Overseas Form' from my Health Insurer. This despite three letters, a dozen phone calls, two letters from my GP etc. I am left to fund everything - treatment costs, flights and other travel and accommodation.
Happily, I am due to fly to the UK in about 10 days time for 5 days intensive physio and other treatment.
Now my questions:
Has anyone had a similar experience (chemical clash triggering the start of FND)?
What happened? Your experiences would be useful to hear.
Could you prove the link between the clash and FND? How?
All and any answers gratefully received.