NEWLY DIAGNOSED BUT NOW MYSTIFIED

[Miep]

I was in hospital recently for a serious bowel operation and whilst 'incarcerated' was told I have epilepsy. Several years ago I started to have moments when I jerked unexpectedly (and usually managed to knock something over in the process), which my  then doctor diagnosed as tardive diskenesia. At  the time he prescribed Lyrica, which I still take - I had read all the accompanying documentation about it being used for epilepsy, but thought no more about it - but now I am beginning to wonder if his diagnosis was incorrect and I have in fact been suffering from epilepsy for roughly the past 7 years.

Upon leaving hospital I was also prescribed Keppra (500mg twice daily) in addition to the many other drugs I have to take) and told to contact my doctor. This I duly did, only to be told that my discharge notes hadn't arrived from the hospital and, until they did, nothing could be done. A month ticked by and I received a letter asking me to call my doctor's practice, only to be told that I could only have a telephone appointment...in a months time!

So I don't know what sort of epilepsy I have, not what treatment would be beneficial and  I frankly don't  hold out much hope of a telephone diagnosis.

Does anybody have any suggestions?

[EpilepsyAction1 Partner Epilepsy Action]

Hello Miep

It sounds like you have been through a lot recently. This must be frustrating to find yourself in this situation.

Some medical conditions can cause symptoms similar to epilepsy. If you have concerns about your diagnosis, when you see your GP it would be worth asking if you could be referred to an epilepsy to a specialist so they can confirm your diagnosis. This is usually a neurologist. When trying to find a cause for what is happening to you, a specialist doctor will usually talk to you about your symptoms and may do some medical tests. This will help them to make a diagnosis: epilepsy.org.uk/info/diagno...

It will also give you chance to talk more about treatment: epilepsy.org.uk/info/treatment

As you are unhappy with the care you have received from your GP surgery, maybe you could talk to the Practice Manager there surgery to express your worries and ask for an earlier appointment. More information about this can be found on our website: epilepsy.org.uk/info/diagno...

If you would like to talk about this, or if we can be of any more help, please feel free to get in touch: epilepsy.org.uk/info/suppor...

Karen

Epilepsy Action Advice & Information Team