All about Guillain-Barré syndrome: Peter von der Fehr's diary, page2!

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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16th January 2002: I've begun noticing a loss of energy, and feel that my legs have weakened a little more. I've just gone down the stairs leading from the first floor, and I can feel it in my legs for a while after. My speech is also a little distorted.

I've wondered about insisting on plasmapheresis if and when it becomes necessary: Upon asking earlier if there was a cure for the syndrome, I was told that I could have IVIg, but that it was very expensive, about 13,000 USD a pop!!! To which I replied that since I've been paying my taxes for over 20 years, I was probably entitled to the best medical treatment available.....!!

I'm looking forward to the physiotherapy. Didn't bother going to the hospital this morning, but I have an appointment there tomorrow morning, during doctors' rounds.

17th january 2002: Nothing much happened at the hospital today. I am now an outpatient, which suits me fine as I have no intention of sleeping here anyway. A doctor, yet another new face, examined me and checked my motor function. All he could find was slightly reduced sensation in my toes.

My journal has been sent up for the coming SSEP test (SomatoSensory Evoked Potential). This test measures the conduction of the sensory nerves from the arms and legs through the spine to the brain, using electrodes on the arms, legs, back (spinal tap area) and head areas.

The results of some blood samples have come in: the doctors now think that I had drunk a couple of bottles of wine during the last few days, as there were traces of alcohol and my liver count was slightly increased :-)
I told them I hadn't touched alcohol since New Year's eve - whew, I certainly enjoyed that party!! :-).
Came home early today for a change.

18th january 2002: Was at the hospital at 09.00 and at 09.45 a nurse took me up to my SSEP examination. It took about 2 ½ hours and caused some discomfort. I'll get the results on monday.

I asked about the results from the samples (stools, spinal fluid) and tests for Borrelia but my journal is still up at the SSEP department. Was told I could call this evening after 20.00 and see if the results have come in. So we're waiting, watching the clock.
I have not asked the neurologist what type of GBS I have, as they don't have the results yet (hope they have them tonight or by monday).

On monday, I am to meet with an occupational therapist and a physiotherapist.

Situation report. Its friday evening. I tried to go up the stairs taking two at a time as always, but couldn't do that today - so my legs ARE a little weak. I cycle every day to the bus stop, though (this syndrome is not going to break me, not unless I can't walk or breathe any more!! :-)) but all in all, no big changes, TOUCH WOOD.

As for this diary, I dictate and Lisbeth fills in the diary, so things move along a little faster than if I were to do it! Sitting together before the computer is cosy, and we enjoy reading the replies we get to our emails. IF my condition should deteriorate so much that I have to be admitted to the hospital, Lisbeth will continue to keep the journal .

More news on monday about how the weekend went, have a good one!

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