So today I had my second appointment with Professor Edwards at St. George's Hospital in London. It was a year ago today when I last saw him.
He started off asking in there has being any changed ins my symptoms. We also went through the test results of my video telemetry and he's pretty sure that all my seizure are non-epileptic in nature. I said how my muscle spasm attacks where getting worse and how problematic and painful they are because I'm conscious but I can't do anything and I'm in a heck of a lot of pain with them and with the complication of my joint hypermobility it causes my joints to sublux/dislocate but also I can't do things like voluntary move because I'm in rigid spasm and I can't eat or take medication etc. I also said how helpful having my wheelchair has been and how my weakness has worsened such as having more falls and dropping things. I also mentioned that my pain has flared up recently and also how the clonazapam has helped a little, reducing my tonic-clonic seizures and really reducing my absence seizures. I also said how my cognitive function and 'bring fog' has become more problematic. Dad and Mandy said how my tonic-clonic seizures have changed which I'm unaware of because I'm unconscious during those episodes.
I explained the difficult relationship with my GP and how he wouldn't prescribe me diazepam without an explanation despite how infrequently I used it when he was prescribing it to me so Professor Edwards is going to write to my GP to try and insist that he does give me access to that medication.
We also discussed ways of reducing my needs for ambulances and A&E so we thought about buccal Midazolam to be used only in the extreme and I said that my nurse can arrange training on that. So hopefully my GP will prescribe that too and he wasn't able to prescribe himself so fingers crossed my GP will be on board if not I have a few back up plans in my mind and my nurse is going with me to see my GP in a few weeks so hopefully Professor Edwards will have written to my GP by them and we can get this medication prescribed. Professor Edwards is also going to rewrite to my GP highlighting education and understanding around FND and M.E. and he was very understanding of the prejudice and 'Neanderthal thinking' (as he put it) around illness like FND when I explain to him how I'm treated in A&E and with my GP.
Professor Edwards also gave a really good explanation of what FND and M.E. is and how the the brain works, or doesn't work in my case and how there can be a multitude of reasons for this just like with other illnesses like strokes or MS.
I got a little bit upset in the appointment as I just want my life back and with me having multiple neuro symptoms he classed my case as severe but he said there is hope and I need to hold onto that and University and independent living isn't an unachievable goal for the future. He explained some treatment options. One is a rehab programme at Stanmore which is for people with pain and hypermobility and the other is Leeds. The Leeds program I will most likely qualify for as we've exhausted all local resources as we have to apply for special funding for that and part of that is that local care has been attempted but the neuro symptoms are still present and severe.
I had a little 1:1 chat with him and explained how bad things can get, like how I struggle to do the most basic task some days/weeks and I mentioned Continuing Health Assessments and he's going to put some supporting evidence together for that and he was happy to hear about the local complex needs team that I've been accepted for. I also think he's going to write something about an ambulance care plan when I explained to him how I respond to seizure treatment and how when needed things like Entonox helps with my muscle spasms? If that's not in his follow up letter I'll get in touch with him about that as we really do need an ambulance care plan for times when ambulances are needed but primarily the aim is to reduce the need for ambulances and hospital admissions.
Professor Edwards is also going to refer me to a specialist M.E. team as we don't have anything locally and I felt it would be helpful to see and speak with people who understand M.E. and offer me treatment and advice on living with the condition.
Think that's about everything. I'm going back to see him in 6 months time. I feel such gratitude to have Professor Edwards as part of my care and what he does for me and his great kindness and empathy like when I got unset in the appointment saying "I just want my life back" and him just being so understanding and how at the end of the appointment he picked my bag and crutch up and handed it to me; no other clinician has ever done that for me, and true me, I've seen a lot of clinicians over the years!