Diagnosis debate – Peter Woolsey

Although in his late 70s, Peter Woolsey was a fit and active entrepreneur who enjoyed regular trips abroad both for pleasure and business. The unexpectedly ground to a halt in December 2018, when he started to experience the first signs of Guillain-Barre syndrome. Despite his own GP making an accurate diagnosis however, things didn’t progress quite as expected, as he found he had to argue his case.

December 2018

Friday 14th – Attended conference in the West End of London, travelling by train and tube.

Friday 21st – Been feeling tired since last Friday, with numbness in my feet and legs. Legs finally gave way today. My GP diagnosed Guillain-Barre syndrome within ten minutes of seeing me and called A&E to tell them what was required. His diagnosis was over-ruled by a senior doctor (Spanish) who told her junior doctor (also Spanish, in Spanish), to ignore the diagnosis, saying that I only had shingles and I was a nuisance. Having lived in South America, my wife speaks Spanish fluently. She understood exactly what the senior doctor said and told me, so that I could challenge her. I had to threaten to sue the senior doctor (in Spanish, via my wife), to force her to arrange a lumbar puncture. This was delayed until the next day.

Saturday 22nd – After arguing for a lumbar puncture (and threatening legal action), I had two failed attempts by a young registrar. I then insisted on an experienced anaesthetist who successfully obtains a sample of my spinal fluid.

Sunday 23rd – Consultant neurologist confirms I have GBS and insists that, owing to my age, I must assure him I’ll take rehabilitation seriously before he will prescribe IVIG! Treatment eventually commences this evening, two days after my own GP diagnosed GBS.

Monday 24th – Assigned to a Renal Ward, no one knows why I’m there and no one knows about GBS. Five days of agony, terror nightmares.

Saturday 29th – I read up about GBS online and start exercising every 2 hours, day and night, am told to stay in bed by daytime staff!

January 2019

I managed to walk to and from a set of stairs and then climb the stairs – unaided – and walk back to my bed on the afternoon of January 3rd. Leave the hospital, walking with one stick, return home and begin exercising daily. My local physiotherapist and I design a simple programme of exercises.

February 2019

Symptoms seem to reappear, but a doctor at Townlands in Henley (the first knowledgeable doctor to talk to me about GBS) reassures me.

March 2019

Able to do most things by March, including business visits to Norway and Scotland. Able to cycle again.

April – June 2019

Business trips to Estonia, Scotland, Manchester, Ukraine. Able to function normally, although feel tired occasionally. Relearned how to swim.

August 2019

Drive to Spain via France and manage to water ski on two skis on a cable system, not ideal but realise I’m much stronger.

September 2019

ISIS Aqua- Ski Club, Playhatch, near Reading. Manage to Water-ski on a single Mono-ski for ten minutes. I now have full mobility and more than 80% of my previous strength.

If you would like to share your experience of diagnosis and treatment (whether good or bad) please email your story and photographs to office@gaincharity.org.uk, subject line: gain4all stories.

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