Anon - your comments are most welcome here, thankyou. To everyone - I am aware that I still may receive an ms diagnosis in the future. My scan was on a T1.5 which may have missed tiny lesions, so I haven’t closed the door on ms completely. But I am aware that, without firm evidence of that, the medical profession must pursue the best course of action they can and I must willingly go along with their advised treatment. Now, I’m not about to get all wound up about this. I still intuitively feel that it is a physical problem. Yes, I get anxious (and am recovering from a tough period in my life, emotionally). My hubby said a whole sentence to my face last night. I heard sound but was completely unable to make sense of it…After the first couple of words, I focussed but still couldn’t understand. I had to ask him to repeat it and understood the second time, though I still had to concentrate. So…next step: find out from the neuro secretary what I do next!
Update: I have since received a letter from my neurologist confirming neurological physical symptoms (and hence an FND diagnosis). She referred me back to my GP who I saw yesterday. I was told that the recommended treatment was Cognitive Behavioural Therapy but there is a year long waiting list, so we’re following the Chronic Fatigue aspect as treatment will be available sooner. Also, apparently my MRI showed significant swelling around my sinuses (I’d had sinusitis just weeks before) so I’m to be referred to an ENT specialist to rule out causes for my frequent dizziness. On top of all that I’m applying for the ESA benefit and my GP said to also speak to the Citizen’s Advice Bureau. I asked if this is classed as a disability and was told yes, this is a disabling condition because it is hampering me but that there is hope for improvement. I still haven’t completely ruled out the possibility that this is ms but will deal with it and my course of treatment, when I eventually receive it, as best I can. I’ve found a private FND group on Facebook and it is very helpful. So, I may not be around here much but I wish you all the very best ![]()
Hi Reikiblossom,
Have you heard of The Lightening Process? It might be something worth considering if there is a long wait for CBT? I don’t know what it costs (it may be cheaper to pay for CBT privately!) but a friend of mine who was diagnosed with ME/FND gave it a go a year or two back, and had remarkable success! She now leads a ‘normal’ life, having been virtually bedbound and really poorly for several years. She works 4 days a week and is on the local council, as well as passing her motorbike test!
I’m not saying it works for everyone, but if there is no physical reason found, as yet, for your symptoms, and CBT is being suggested as the go-to treatment, it may be worth a bit of research?
Wishing you the very best of luck xx
Thankyou, Hunny. If I could afford to pay for any sort of treatment I have several good options near me. I’ve never heard of the Lightening Process but may look into it. I am lucky that I have friends nearby who are happy to do the occassional therapy swap (Reiki, The Metamorphic Technique) so I’m not completely without help. Maybe if my application for ESA is successful I may be able to afford regular sessions of something.
Hello Reikiblossom
I’m glad you’ve found a FND group, on facebook that’s helpful. You need support from people sharing a similar journey.
Don’t forget to keep coming back to say hello and let us know how your getting on
Take care
Love & Light
Noreen
Hello Reikiblossom,
lovely to hear from you and thanks for updating us, I wish you well and hope we do hear from you now and again. Now that my sister has a Hugh’s syndrome diagnosis and my Mum had it too I am about to look into this for me.
takecare and lots of love for the future,
Catherine xx
Hi All xx
can I just add that FND does NOT mean that the docs are saying it IS psychological!! Unless of course they tell you so!!
FND is a ‘catch all’ diagnosis - no doubt about that and any neuro worth his salt will admit to it - what they are aying is that it could well be a PHYSICAL cause - but one that they have not been able to identify - yet!!
xjenxx
Thanks everyone! Jen - yes, I still feel strongly that there is a physical cause. Just because they can’t see it doesn’t mean its not there. I’m still allowing myself the possibility of ms - I’d rather face it as a possibility that fear it as a probability. Anyway, slow to come as it is, treatment has been promised. My GP actually looked quite frustrated by my situation but I trust that she’s doing the best she can. I’m not leaving this forum completely any time soon! So many lovely, supportive folk here ![]()
Well its been a real journey for us both… glad you got some form of diagnoses.
Stay strong & keep in touch