All about Guillain-Barré syndrome: Peter von der Fehr's diary!

Peter von der Fehr and his girlfriend, Lisbeth, would like to share their experiences about GBS. Here are excerpts from their diary recording the course of Peter's deterioration.
Email them with support, see also Peter's appeal under 'Readers' Comments'

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Tuesday 2. January 2002: Pins and needles, in my right foot.

4th January 2002: Pins and needles have now turned into tingling and an uncomfortable sensation. The symptoms are slowly making themselves felt in my left foot as well as my left hand.

6th january 2002: My right hand is now affected as well. Contacted the doctor on duty at Glostrup hospital (Denmark) who advised me to contact my G.P. tomorrow.

Monday 7th january 2002: My G.P. gave me a check-up and advised me to have blood samples taken tomorrow.

9th january 2002: Samples taken yesterday. Am beginning to slowly lose control over the right side of my face. I can't close my right eye and smile with that side, nor eat.

10th january 2002: Called the G.P. My blood samples show nothing abnormal. Told him about the increasing severity of my symptoms. We agreed that I should be admitted, and have a CAT-scan and a spinal tap (lumbar puncture) done.
He sent for an ambulance to pick me up and take me to the hospital, where I was examined by a young resident neurologist. She suspected it might be GBS pretty quickly, which surprised me. But then the symptoms are pretty classical.

Underwent a CAT scan and a spinal tap. Got home very late.

11th january 2002: I discharged myself yesterday evening, as I'm feeling fine. The doctors suspect I have GBS.
Return to the hospital today where further blood samples are taken, and another spinal tap done. There was blood in the first sample.
These samples indicate with 99% certainty that I have GBS.

The only information I have been given is that the syndrome could paralyse me completely and that it could take anywhere from a few days, months or even years to recover, added to which it was not a certainty that I would make a complete recovery!! There would probably be some after-effects...
That was quite a shock, and apart from that I was not given other information. I was therefore extremely grateful to find this website. None of the doctors at the hospital mentioned its existence, by the way, despite it being the sole danish-language source of GBS information for patients and their families.

12-13 january 2002: Home this weekend. Discharged myself as I hate hospitals. Am now beginning to lose control over the left side of my face too.

Monday 14th january 2002: Hospital again, more blood samples taken. I also delivered a stool sample.

15 january 2002: Have felt the first signs of weakness in my legs, and am a little depressed. I can still walk and perform normal daily chores.

Returned to Glostrup hospital again, I have been admitted but I refuse to spend the nights there until I can't avoid that anymore!!
The consultant physician of the neurological department has recommended physiotherapy for my face - strange, as I cannot move any facial muscle, be it to smile, frown or wink!

They have not yet found out what triggered the GBS but have begun eliminating the possible suspects (Borrelia, Campylobacter jejuni, etc.).
I have not been offered any treatment yet, probably because they still don't know what triggered the GBS?

Coming back tomorrow to see if the results of the samples (blood, stool, spinal fluid) are back from the lab.

Lisbeth has been to the library to get Joseph Heller's book, No Laughing Matter, to see if she can find information on the possible course of the syndrome and how other patients experience it. She is also keeping this "diary", or journal , detailing my symptoms and the course of the syndrome. We've agreed to publish it here as an ongoing project - we would be very pleased to hear that it has helped others.

We hope other patients and ex-patients will email about cases in which the patient made a good recovery. There are very few of these stories published. We know we will definitely remember to report on Peter's progress when he has recovered! :-)

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