Late developing miller fisher syndrome symptoms

[Perwen]

My son has been diagnosed with miller Fisher Syndrome. A couple of weeks after getting out of hospital he is still developing new symptoms including very disturbing sensations in his head. His specialist won't see him until April and he has no-one to ask if this is normal. Can you help please.

[Perwen]

I have talked to my son again and he says the feeling in his head is as if his brain is too big and is being squashed by his skull. It is as if something is applying great pressure to it. He can't find this in any other Miller Fisher sufferers symptoms on-line. Is this normal?

[Perwen]

He has a sensation that he describes as a headache but not like a normal one. It leaves him feeling dizzy and nauseous. He has been to his GP but she doesn't really know much about Miller Fisher. She contacted his specialist to try and bring his appointment forward but the specialist refused. We really want to know if this is a normal sensation, and is it normal to have new symptoms developing. In the last week he has suddenly started having stiff facial muscles. Thank you so much for trying to help, we really feel deserted by the NHS.

[Dr Santos]

Hi,
How is your son? Can you elaborate on the head sensation he is feeling? Miller Fisher syndrome is a rare, acquired nerve disease that is characterized by abnormal muscle coordination, paralysis of the eye muscles, and absence of the tendon reflexes.The majority of individuals with Miller Fisher syndrome have a unique antibody that characterizes the disorder. In most cases, recovery begins within 2 to 4 weeks of the onset of symptoms. It is best that you have this checked by a doctor especially if the new symptom persists. Take care and do keep us posted.