GP/Neurologist Discrepancies

Before you start reading this post, please bear in find that I think the vast majority of people who work in the NHS do a fantastic job, often under difficult circumstances. If it wasn’t for them, I certainly wouldn’t be able to walk and probably wouldn’t even be alive, so I am very thankful to each and every one of them. The NHS is most certainly the best thing that the UK has, and I would never want to see it become privatised.

I’m a member of an epilepsy forum, and I’ve found that there are frequently discrepancies between what GPs say, what neurologists say, and that often GPs simply don’t read the neurologist’s letter. When you are either immobile or work 9-5, this can cause many problems trying to sort out you the prescription.

I didn’t really have any problems until this week. I’m treated by a fantastic neurologist in London (after we had exhausted my local neurologist’s expertise), which my GP can’t seem to comprehend. That’s fine – he’ll get over it. My GP won’t change my prescription until they receive the letter from London advising a change in my medication – again, I can put up with that – but last week they told me they hadn’t received the letter when actually, they had.

So why the big problem? Well, I’m on three different meds for epilepsy currently, and I was attempting to come off one (Zonisamide) when I had a seizure. So, I rang my epilepsy nurse (who is great) and we agreed to go back onto the full dose of Zonisamide and try coming off the Keppra instead. I’m on only a small dose of Clonazepam but I suspect that will be next, if the Keppra is successful!

So I waited until I got my letter from the hospital and rang my GP. They said they hadn’t received the letter *rolls eyes* and so I had to book half a day off work to book an appointment. Luckily my appointment was with the best GP in the surgery (he once spent an hour with my husband!) and actually, the letter had arrived. I managed to get a prescription to reduce my Keppra – which I’ve started, and no problems thus far (touch wood).

You may be wondering why I’m so keen to get off the meds when my epilepsy isn’t even fully controlled. Well, I will go into more detail in another post, but basically, I’ve always wanted a family and ever since I’ve been of child-bearing age (well, since I was about 18), my medication has been geared around that. I came off Epilim and have pretty much tried everything under the Sun to try and control my epilepsy – without success.

My neurologist said that if I was to get pregnant, to call them immediately and they would change my medication – perhaps using a very small dose of Epilim and a safer drug (though they’re not really sure yet). However, now I am changing meds, my epilepsy nurse said that it’s best to wait until I’ve changed over until trying for a baby. When I saw my GP, however, he looked at the tablets and said, “You’ve got to wait – you can’t have a baby with the tablets that you’re on.” Ha! In a way, I’m lucky that he knows that there ARE risks – I am fully aware of those risks (and I’ve heard of people who have had it’s safe to have babies on Epilim, even in recent years!). However, I don’t think he realises quite how London would get me down there straight away if I was to get pregnant and try to get me onto a safer concoction!

At the moment though, I’m not pregnant and am unlikely to get pregnant in the near future at least – I will write a separate post on that!

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About katesds

I was diagnosed with juvenile myoclonic epilepsy when I was 11 (though I was having what the doctors thought were febrile convulsions up until the age of 5). I'm now 28 and have absence and tonic-clonic seizures, triggered by tiredness. I've been on every AED going but it's still not fully controlled. I'm waiting for the magic cure. Epilepsy affects my life in every way but I try not to let it control me. I am not an epileptic, I am me with epilepsy!
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