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I am slightly confused at the moment

Posted , 2 users are following.

angela43016
angela43016

For the last 5 months I have been undergoing tests for GCA and PMR (which my Mother suffers with). Unfortunately I blacked out in June and fractured my skull (have no recollection) and  was in hospital HDU for a fortnight and now the Rheumy clinic appears to have forgotten me and I am undergoing test for Epilepsy? I have to go for my EEG results tomorrow ! Have lost my driving licence for at least a year and my job and realise that I may not get a diagnosis tomorrow.

Regards

1 like, 13 replies

13 Replies

  • Tazchurch
    Tazchurch angela43016

    Posted

    Several issues here.

    Was your job dependant on your having a driving license and what reason did they give for your dismissal?

    Get in touch with consultants secretary at Rheumy clinic or just a general one there if not got a consultant, and find out what is going on.

    Tell the neurologist about effect had and how soon can you expect an answer. Be aware that one episode does not mean epilepsy and that the loss of a license for a year is standard after head injury.

    Finally get your GP to kick butt for/ as well as you.

    • angela43016
      angela43016 Tazchurch

      Posted

      Thank you for your reply. Unfortunately my brain injury has left me housebound (hopefully not too long), I have now been diagnosed with epilepsy, hence, no driving and I cannot walk very far due to head injury. Rheumy consultant seems to think that because neurologist has diagnosed it must be that and has now told me to bring down the steroids? I am unfit for work and have no idea if it is permanent. I could not get to my job and could not cope with it due to memory problems. Once again thank you.
    • Tazchurch
      Tazchurch angela43016

      Posted

      No problem and you have my best wishes. Been dealing with this myself for over 20yrs, an unusually long period, so please message me directly if there is anything I can do to help.

      Get your neurologist and rheumy consultant to speak to each other, use your GP to do this and ask why thinks what does. Epilepsy action is brill, online, has a freephone helpline, email support, fantastic leaflets etc. Am messaging you their website address.

      Take care and big hugs at what I know can be a scary and stressful time xxx

       

    • angela43016
      angela43016 Tazchurch

      Posted

      Once again thank you, early days for me at the moment. The Rheumy and neurologist have been in touch with each other, so am going with it. I'm sorry you have been dealing with it so long. Have logged on to Epilepsy Action as it was recommended by my neurologist. Just have so much going through my muddled head at the moment. No doubt I will cope as you all do. Thanks again
    • Tazchurch
      Tazchurch angela43016

      Posted

      Ring them, their great.

      Sounds like a good Neurologist, so as you say stick with it.

      So glad he recommended the website as not exist when I was diagnosed at 16, am 49 now, but not a problem until I was in my mid 20's when I too lost my license and my job as it relied on it.

      Remember I and many others are here for you

    • angela43016
      angela43016 Tazchurch

      Posted

      It means a lot to talk to someone who understands. My neuro has discharged me from his care and told me to go to my docs if I need help. I, like all of you have to get on with it but I can't say that I'm not adraid
    • Tazchurch
      Tazchurch angela43016

      Posted

      Has he prescribed medication, if not doubt he feels need it?

      Has he said what sort of 'seizure' it is, there are several, as in myriad!

      It is likely you will get more help, as in general information, from Epilesy Action at the moment than the GP. Having said that you, they and the GP can work together to find the answers you need in your own particular case.

    • angela43016
      angela43016 Tazchurch

      Posted

      He has said partial or focal. I have been on Lamotragine, started in hospital but he says he wants me on it for life, not sure why? He did not even look at EEG results but diagnosed it anyway. Thank you
    • Tazchurch
      Tazchurch angela43016

      Posted

      I have messaged you a couple of links.

      I myself take lamotrogine and it is the first line treatment for these types of fit. It is a new drug, with few actual side effects - despite what the links say and is very effective.

      I have several types of epilepsy/seizures one of which is known as Partial Complex.

    • angela43016
      angela43016 Tazchurch

      Posted

      Have only been on it for 6 weeks but no side effects so far (hope it stays that way). The one thing that worries me is that he says my seizures might be that I just drop and lose consciousness, no reply to that at the moment. Once again thank you for your replies.
    • Tazchurch
      Tazchurch angela43016

      Posted

      So far as I know these are called tonic and have no other name, (they are another type I have), and do not seem to relate to either focal or partial seizures.

      Best thing is to get your GP to give you a proper explanation as will get a letter from consultant, about a weekish after see them.

      In the meantime ring epilepsy action and download alot of their leaflets.

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