Sunday, 19 January 2014

Getting my head around 'functional neurological symptoms'

I have a number of firm 'medical' diagnosis to explain the bulk of my symptoms, but one of my symptoms is currently free falling into the category of "functional neurological symptoms" and I'm facing the medically unexplained head on. Gulp.
 
I say it like it is something new. It isn't. Ever since I have has these particular symptoms (intermittent weakness in my limbs), the doctors have been at a loss to any reason why. I think I knew deep down that there probably wouldn't be a nice tidy diagnosis to explain it, but it has taken a year or two for that feeling to bubble up from my sub-conscious. But here is it in clear daylight.  

The aim of this blog post isn't to indulge myself, but to raise awareness and try to explore some of the stigma associated with this area of neurology. I know there is low awareness and high stigma, because it has been a step learning curve for me and I have stigmatised myself about it frequently.   

This new explanation for the symptom is accompanied by a few different sentiments. 

Firstly, gratitude towards my specialist nurse for raising the possibility of functional neurological symptoms along with aghast that another medical professional could handle the situation so poorly. The specialist nurse was open and forthcoming about how little they know about this area (her honesty was humbling), reinforced that they don't think it is "all in the mind" and reassured me that they didn't think I was mad. She acknowledged that this was probably a difficult conversation for me to have and a hard thing to hear, while addressing my biggest fear (a serious biological problem would be missed once given this label) by saying that they are still keeping their minds open. For the first time ever, a health care professional had discussed a potential diagnosis and actually given me somewhere to go for all the inevitable questions that I'd have about 10 mins after we finished our conversation - www.neurosymptoms.org - I can't say how helpful it was! All in all, a very well handled conversation showing compassion, empathy and understanding - I am very grateful. I also had a very positive and reassuring discussion with my GP and neuro-physio.

A stark contrast to a senior neurology consultant who, after what felt like a very half hearted neurological examination, declared he could find no biological or 'organic' reason for my symptoms, and therefore there was no biological cause and seeing a psychiatrist was the next step. Rightly or wrongly, I interpreted this as exceptional clinical arrogance - if he couldn't explain it, there was nothing to explain, and it was all in my head. I appreciate that is it human nature to be dismissive or defensive if confronted by something you can't explain, but I hadn't expected him to be quite so overtly so. When asked if I was stressed or anxious about my health, I replied yes (who wouldn't be?!), which seemed to add fuel to the "she is mad" fire. The simple principle of cause and effect seemed to have passed him by - I had no history of anxiety or depression before my symptoms, suggesting in my mind, that my symptoms couldn't have been solely caused by that. 
With a more rational hat on (not one I find easy to wear often when thinking about my own health care I admit!) I know that the consultant saw me on a good day, and did make a recommendation to for me to see a neurologist next time I was having a relapse for a proper assessment when the symptoms were presenting. But I was overwhelmed by the sense of being dismissed and belittled. 

While the voice still niggles in my head... What if they are missing something serious?... I am becoming very clear in my own mind that the functional tag is probably going to be my tag (for this symptom at least), I don't actually want to put myself through the rigmarole of seeing another neurologist while having a relapse only to encounter arrogance or dismissal. I know that not all doctors would behave in such a way, but I don't think I am prepared to take the risk. 

But the issue isn't just mine. My parents have been very supportive since I have been ill but we differ in how long our 'tethers' are for pursuing things. I feel at the end of my tether for pursuing things when I have a gut (and logical) feeling that we have arrived at the answer. While I admire my father for his "just because it sounds almost impossible doesn't mean we should try" attitude, which as his daughter I have found inspiring in many other situations and I love his protectiveness and how much he is willing to fight for me. But this isn't a fight I want to fight any more. 

And this comes with a sense of relief. A relief that these tortuous years of chasing explanation for this final unexplained symptom might be behind me and everything that comes with each appointment - the creation and destruction of hope. I can focus on managing what I have as best I can, which is neither terminal nor degenerative (I have a lot to be grateful for). 

I mentioned a few paragraphs back that I have had a relapse since the 'functional' explanation/diagnosis/issue (I don't really know what noun is really applicable or appropriate!) was raised, and although the same as my other relapses physically, mentally I felt really sick. Was my brain doing this to me? Somehow, even though my brain is my nervous system, my brain feels even more 'me' than my nervous system. Have I caused myself, but more distressingly my family and friends, all these problems? I know that I haven't, but sometimes that is hard to really 'know'. And when I'm not secure in that knowing, I am plunged into self-loathing and a complete distrust of my own mind. 

Self-stigma features very prominently here. It has taken a long time to write and even longer to publish this post. I fear about being so open about the psychological aspects of my illness because the stigma I apply to myself is likely to be applied by others. Writing this and being so open about the conflicting emotions that it entails has made me question my own sanity on more than one occasion! 

I have rational moments (or perhaps they are moments of utter denial?) where I just think all this means is that they can't explain why I am getting these symptoms. That is fine. The treatment of graded exercises and psychological support sound sensible (although what I already do). Maybe in 20 years time medicine will have advanced and I'll have a 'proper medical cause' (for what that is worth!?) - but that sounds like the ultimate denial and why do I feel such a craving for a respectable label for all of this? 

But the other part of me naively hangs on to the hope if it is functional neurological symptoms, then a few courses of CBT might cure it.... (Naively, because I have already had a few courses to no avail, and because I know quick fixes don't exist).

I think that is enough conflicting emotions for one blog post...

15 comments:

  1. Anya this post is so honest and raw, and balanced. You brilliantly sum up so many elements, the doubt and sense of self, the fight between diagnosis and acceptance, not to mention highlighting some of the many challenges made worse by arrogant 'experts'. Your blog is always thought provoking, but this one is on another level. Thanks for sharing.

    ps The point you made about 'securely' knowing/self loathing reminded me of this, unrelated in topic but perhaps some similarities around the impact of others opinions!! http://www.theguardian.com/books/2014/jan/11/why-society-problem-being-alone

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    1. Thank you! The link was really interesting, and some very similar themes which was quite reassuring!

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  2. Anya you are wise beyond your years. What a fantastic blog. I bet it strikes a chord not just with patients with neurological symptoms but with many other conditions too. Its a really stark example of a situation which must occur again and again in outpatient clinics. The specialist is delighted to tell the patient that he has found no medical cause for her symptoms. The patient (who is leaving the consulting room with exactly the same symptoms and the same lack of explanation as she entered it) is dismayed. Often each set of symptoms is treated as a standalone situation, and reviewed as such, rather than within the overall context of the patients experience and history. This type of situation does not seem to sit comfortably within the medical model (and yet for some people, such as myself, the passage of time leads to a clear diagnosis). There must be a better way !

    My own similar experience also involved a Neurologist (?just a coincidence). After an MRI, Lumbar Puncture, blood tests etc etc I had a conversation similar to yours. After a further year of symptoms I was diagnosed with a condition which could be diagnosed with a simple blood test and treated with dietary changes.

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    1. Thank you for your kind words! You have summed it up really well! I am so pleased to hear that your journey has improved and a good treatment is available.
      Best wishes,

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  3. Anna, being a neuro physiotherapist having seen quite a few patients with functional symptoms, I would like to assure you that things would get better. Though the reason is unknown, the treatment protocol especially physiotherapy should be based on addressing your symptoms. I have had some success in treating patients in this way and unfortunately in some cases it didn't help. You need to understand that whatever symptoms you are experiencing is non progressive, there is no pathological alterations but you have to stay positive and engage in the therapy process to see desirable effects. I agree with you that many clinicians do not know much about this condition and may sign you off saying its all in your head.please just ignore them and give your very best with the strengthening,fatigue and self management strategies given by your therapist. I have heard that the unit in queens square London is geared up for more of your issues. Why don't you ask your GP to refer? And please do not give up...keep working with your neuro physio. Success comes with 90% effort from you with 10% guidance from clinicians.wish you the very best!

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    1. Thank you for your encouragement and support! I am already at the Queens Square unit, and starting to access their specialist support. Your clear understanding and empathy makes me think your patients are very lucky to have you!

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  4. Great post! There is a lot of helpful information here, keep up the good work!

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  5. Thanks so much for this post! I love reading your blog, please keep up with great work here!

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  6. I was diagnosed with functional neurological disorder in June of 2015. It took until now to wrap my head around the idea that all functional is is they cannot find a disease process or something to explain why I have these symptoms. Because when I was diagnosed I was treated as though I was mad, that it was all in my head and I brought these symptoms onto myself. It wasn't until I reached out to other fnd patients that I learned that was soooo incorrect I could scream. It doesn't have to be brought on by trauma! It doesn't mean I'm mad! It just means my nervous system and my brain aren't communicating properly! My symptoms went away for months and now they're back and they brought more with them so I have to pursue more testing to see if they missed something. But even if it is fnd, I refuse to be treated as a head case any more. Just because some arrogant prick cannot find an answer doesn't mean he gets to dismiss me as crazy. FND is a very real thing. A vast range of people have it. Some had it come on because of trauma, some (like me) because of a virus. There are many many different reasons for it to happen. But NO ONE gets to tell you you're crazy. NO ONE gets to dismiss you. It is VERY REAL and is in NO WAY in your head. It took a long time for me to learn that. And now that I have to face new symptoms I have to prepare myself for a new round of doctors to dismiss me as a head case and refuse to look for answers.

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    1. I just got diagnosed with functional neurological disorder today. At first I thought, great I have a diagnosis for the many symptoms, but, sadly, the more I read about this diagnosis the more i feel, "they think I am bloody nuts." I don't know what to do. I feel so messed up and all I want is an answer to what is going on with my body.
      Wendy

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  8. Thanks for the article. Having seen first hand someone close to me having an episodes of excruciating phantom limb pain and feeling utterly hopeless - what help can you offer to ease the pain in a limb that wasn't there? Pain is 100% real and 100% in the brain; just the same as vision and hearing are. Our brain makes sense of the world around us and in us and combines the two to keep us alive. I suspect understanding pain may help with understanding and managing FNS. I have found watching and reading work by Prof Lorrimer Mosely and Dr. David Butler has been very helpful for me to understand what's happening. I would be really interested to hear what others think and how we start to have a wider understanding of well-being/ health and understanding that 'non-organic is as real as organic'.

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  9. I have just been diagnosed with FND today. I am still in hospital and after reading up on this diagnosis I am feeling quite nervous about leaving hospital. I am not sure what to do with this and where to start some sort of recovery. Feeling pretty over whelmed and scared!

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