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Peter von der Fehr, Denmark
Original diagnosis of GBS changed to PN (Peripheral Neuropathy)

I noticed the first symptoms 2 days after New Years' Day, 2002.
They began in my right foot, and after a couple of days, I noticed them in my left foot as well.

Feet, hands and face
At the same time as they began in my left foot, they also began in my left hand. This happened on sunday, 6th january, 2002, 4 days after the first symptoms in my foot. I contacted the doctor from the emergency service at Glostrup hospital (Denmark). He referred me to my own physician, whom I saw the next day. My physician gave me a check-up and sent me to have blood samples taken the day after. By now, the symptoms are making themselves felt in both feet and both hands.
Wednesday evening, 09 Jan. 2002, my facial muscles began to weaken and I could no longer control the right side of my face. I called the physician the next day, and told him about this symptom. He told me that my blood samples showed no irregularities, and when he heard about my symptoms, he decided to have me admitted, for a CT-scan and lumbar puncture.

Tests and more tests
I discharged myself that night, as I was feeling fine. The next day I returned to the hospital for further blood tests and another lumbar puncture (there was blood in the first one). The results showed with 99% certainty that I had GBS.

I stayed home during the weekend, losing control over the left side of my face as well, during the weekend. On Monday morning, I returned to the hospital once again for further blood tests, and delivered a stool sample as well.
On tuesday they still had not found out what caused the GBS, but were eliminating diseases gradually, such as Borrelia, Campylobacter jejuni, etc.

Physiotherapy for the face!
Today, tuesday 15th january 2002, I returned to the hospital again and spoke to the consultant neurologist. He has prescribed physiotherapy for my face - strange, as I cannot move a muscle of it, be it to smile, frown, wink etc.!

I am admitted, but refuse to spend the nights there until I can no longer help it! I have not been offered any treatment yet, perhaps becase they don't know yet what caused the GBS. Am returning to the hospital tomorrow, hoping that the results of all the samples (blood, stools, lumbar puncture) have arrived.

The situationen now
Today I seem to be feeling the first signs of weakness in my legs, and am depressed about this development. I can still walk and do daily chores.

My girlfriend has got me Joseph Heller's book, No laughing matter, so that we can find information on the probably progress of the syndrome and how that is experienced by somebody else.

I hope that other patients will write in with positive feedback, I know I certainly will after I get well again*.  :-)

regards,
Peter

 

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