All about Guillain-Barré syndrome: Peter von der Fehr's diary, page3!

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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Saturday 19th January 2002: Nothing much happened today, I don't have to go to the hospital during the weekend. I feel no changes, this is great!
Called the hospital at around 1500 hrs about my samples (blood, spinal fluid, stools) - no reply yet, but they should be back on monday.
Alone for a couple of hours, as Lisbeth needs some time to herself!! :-))

20th january: Just as quiet as yesterday. No hospital visit. Tried to sleep in, but I still have problems sleeping more than 3-4 hours at a time because of my d...... headache! It's with me all the time, and I'd like to know why, as other GBS patients don't complain about that symptom?? It moves around depending on how my head is positioned when I sleep, and is pretty uncomfortable.

Monday 21th january: At the hospital 09.00, Lisbeth came with me to listen in to what treatment the doctors suggest, based on the results of the samples. Waited for only 10 minutes, WOW, before an occupational therapist, Marianne, was available. 20 minutes later I was trying to do exercises for my paralysed facial muscles.
It's a good thing I couldn't see how funny I must have looked, well, probably not, as I could not move my face very much!! :-))

We were there for about ½ hour, after which Marianne told me that I probably wouldn't be able to do the exercises alone at home. So I'm going to be an out-patient from now on, as regards the therapy. She took my phone number, and will call me about my first session, luckily there doesn't seem to be a waiting list.

After that, we went back and waited for a doctor. One came rapidly. This is the 7th new doctor I've met since I got the syndrome, do all medicine students specialise in Neurology?? :-)
He told me about the results of some of the samples - stools show nothing abnormal, and there is no sign of Borrelia! Hmmmmm. Still waiting for the results of the other samples plus the SSEP examination, should get the reply to the SSEP tomorrow.
The doctor also mentioned that they would be looking for signs of a virus in the other blood samples. Guess the elimination method is a great thing, as opposed to jabbing me again and again!! :-)

My feet have begun troubling me. The underside of my feet feel worse, more sensitive and tender, and they feel like great big lumps when I walk. I've also begun feeling pain in my face, especially in the jaw muscles and in the cheekbone area.

Well, that was today. I'll be back tomorrow with more information on the samples, cross your fingers for me please!! :-)

22nd january 2002: Woke up today with a great deal of pain in my feet, so I decided to stay home instead of going to the hospital - all I was going to do there was to get the results of my tests.

I called the hospital about this during the morning and was told I should try again around noon. Tried then and got a nurse who'd just returned after several months away, and she couldn't help me at all.

Told her I wanted an appointment with the consultant neurologist at the Neuro dept., as I felt I wasn't going anyway with the current treatment, which is basically physio. Got an appointment for the 25th, which was unexpectedly soon, so I'm looking forward to that. I have a number of questions to ask him.

Called again during the afternoon for the results, but ..... still no reply! Strange!
I am to come in tomorrow in time for the doctors' rounds. Will try to get hold of a doctor then, and see if I can get some answers to my questions, shouldn't take more than a few minutes.

My feet are feeling much better this evening, as compared to yesterday evening and this morning. I've also relaxed completely all day long. :-) That is to say, I've been lying down all day, wonderful, the only problem is that I wish I could sleep properly soon. My headache is still a major problem.
Let's see what wednesday brings.

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