Sticky Blood-Hughes Syndrome Support
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EEG and pet scan

Yesterday I went for my EEG and PET scan at st Thomas's absolutely exhausted afterwards and today.

The EEG was the same it seemed as the one at my local hospital, but the staff told me it was a test that was usually given to children ? Why but perhaps they were looking for any small seizures that wouldn't have showed up on an ordinary one

The PET scan was good, quick 30mins and I didn't have to go in a big tunnel, just a polo type thing,

I was going to see the consultant after the test , but glad he didn't have time. (My appointment had been changed)

I will be able to take in what he says better when not so tired,

I am really please that I am being seen by the Doctors at St Thomas's and very great-full after years and years of not being diagnosed properly.That I have the chance

4 Replies

Steps forward, however difficult, are always good.


May I ask why you had an EEG. And, do you know what type of EEG you were given that was for a child? I have movement, facial spasms that are very similar to seizures, but they don't show up on an EEG. Any information you can give me will be extremely helpful. Thank you. And, I hope you are feeling better.


Hi, yes I have epilepsy ? For about 10 Years (memory not good)

My Neurologist in my local hospital was useless, I will never forgive him for not diagnosing me that I had Hughes syndrome, I actually think that it caused some damage to my brain giving me mild epilepsy.? By a clot

I am seen by at St Thomas's for Hughes syndrome and because I felt my memory was getting worse although I am on warfarin the Doctor, Ms K Breen who is excellent decided that I should see the Neurologist at ST Thomas's Dr P Holmes where I had the scan, I think it may show up more damage. PET CT .i had a intravenous injection, I think it was radioactive


It was the staff in that unit who told me it was usually used for children. I have sneddons syndrome as well,I was told a few years ago

I haven't had. The result yet but will let everyone know.

Hope that makes sense, what medication are you on ? For your spasms

Hope it I proves for you


Thanks. I'm on Warfarin and Plaquenil. My rheumatologist said that APS and Sneddon's go hand in hand and if you are diagnosed with APS then you also have Sneddon's. She is making comments to me that my last blood test was negative for APS. She is giving me the feeling that this is not primary APS and that there is something else going on. She's not one to give too much information, until she knows for sure. So, I'm still playing a waiting game. I had a really bad episode today with eye blinking and facial spasms. The symptoms were one and off and lasted for about 45 minutes. I was so exhausted after and now I have a mild headache. I am trying to remain optimistic, but I wish somebody would come up with some answers soon. I'm sure you know how I feel.


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