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Sticky Blood-Hughes Syndrome Support
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Well my "new" neuro had me go through yet another 24 hour EEG because of my seizure symptoms. I wasn't sure why b/c I had been through about 5 different types of EEGs already by other neuros only to be told they were normal. Guess what? This one showed a few "sharp waves" during the times I indicated in my diary that I was having symptoms. Apparently this is can happen in someone without seizures. I was so surprised that she said this, b/c if I'm having seizure symptoms w/sharp waves, wouldn't this mean I more than likely have a form of epilepsy. She said she didn't want to put me on epilepsy meds b/c they cause many side effects. I then asked her if I should have a PET scan (which can apparently also diagnose seizures and why you may be having them - blood flow to brain, tissue damage, etc). She asked me why I asked her about a PET scan, and I told her. She said she wouldn't be able to do that b/c in a word she wouldn't be able to justify a reason for one. But, that I could seek a 2nd opinion from an epilepsy specialist - she recommended 2 people I had already seen. She seemed surprised that I already saw them - I thought I told her that in an earlier appt. I am desperately seeking to find someone to help me figure this out and not a dr. to pass me off to someone else. I've seen 4 neuros before her. I truly believe this is not just a symptom of the APS, so my search continues. I would appreciate any ideas you may have. Happy New Year to you all!

1 Reply

This sounds really worrying when you get passed from pillar to post. Sounds like they are trying to save money and therefore not putting you forward to have a PET scan. Is there any way you can go private, just to have a PET scan. No idea how much it would cost though. Is it worth asking your GP to refer you to have PET scan. I can't believe medics are just leaving you to fend for yourself. Maybe go back to the previous epilepsy guys to ask them to perform a PET scan or ask for someone to give you a definite plan of action of what to do next. What I tend to do now is type and print everything I want to know, briefly outline what has already taken place and what I want the Drs. to do and leave them a copy for their file + save a copy for yourself. This way, no-one can deny they didn't already know (as you explained you thought you previously told this neuro you already saw the specialists she now recommended).

Perhaps print off what you just typed and give to your GP but put the words in full and really spell everything out as if they're gormless and not use abbreviations like "b/c". I find medics too gormless to understand everyday stuff.

If you're brave enough and only if it warrants it, maybe threaten the medics that you'll sue them for medical negligence if they don't do something, if potentially something happens to you. Good luck.


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