Not fobbed off & even a diagnosis

Hi, well I think I have finally got my head around my neurology appt last week. She has diagnosed me with Functional Neurological Disorder, along with hemaplegic migraines & trigeminal neuralgia all to keep the fibro company :( have spent the past few days researching all of this & working out where I go from here. Thank you for all the replies to my last blog before I went, it really helps to know I am not alone even tho I am totally isolated because of this. Gentle hugs to you all & hoping you are getting more sleep than I am tonite lol, Janey xx

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  • Morning Janet

    I guess it's good that you have a got names for things,so much time is wasted with Docs and others just saying they don't know what you've got,I will have to admit that I don't know what some of your diagnoses are but I will check them out as I'm interested to know,I do hope that things are coming together now you and everything is making sense for you,sorry to hear you haven't had much sleep..it's awfull when it happens,you've probably had to much going on in your head to sleep! xx

    (((((((()))) lots of soft hugs)))))))))

  • I am trying to get my Dr to refer me to neurology but not managed it yet and also psychiatry but he still thinks he can cure me haha crazy man gentle huggs xx

  • Morning Janey what does it all mean? :) xgins

  • Sorry I wrote Janet instead of Janey its the predictive thing on ipad,if I don't look at what it's doing then I make mistakes...xx

  • I was diagnosed with trigeminal neuralgia last year, the pain was indescribable, thankfully in time is has settled. I do have to take extra tramadol straight after dental work though before pain kicks in. Hope you get some relief soon.Take care x

  • they thought my sister had trigem- after going private it turned out to be cluster headaches. she has oxygen at home, has to inject her self and take a high dose of steroids when has an attack-it has made the world of difference

  • Sorry to hear all this Janey, I suppose the only consolation is that now you know what you are up against and you can be sure of the correct treatment for each condition. I always think if we have a name for something, it is far better than not knowing what on earth is happening to us.

    We are all here for you and we understand your frustrations. If we can be of any help please do not hesitate to ask.

    Take care. (((hug))) xxx

  • As far as I know the 'functional' part means they do not know what is causing it, I think if I was told that I would still remain just as baffled lol. Hemiplegic migraines, I know them well, I have been having them since I was 11 years old and they say that it is hereditary as they are so rare. My GP only knows of two patients with it and one is me. I have TN and I know it drives me insane but I also suffer with cluster headaches(not had one for two days now). We all need something to keep the fibro company, it is not happy with just us, that would be too easy. I hope you feel better soon and have some good days xxxxx

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