In Their Own Words In each issue of the newsletter, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel. Theresa Dempsey Horsham West Sussex England tsdempsey[AT SIGN]hotmail.com 20th November 2001 Hello, my name is Theresa Dempsey and I am 31 years old.  I live in Horsham, West Sussex, England.  I suddenly became ill on the 27th March 1999 when I woke up with a stiff neck.  I thought that I must have slept in an awkward position and it got a bit better during the day.  That night I went to bed and I woke up in the early hours of the next morning feeling very strange and my chest felt very tight and it was difficult to breathe.  I managed to get to my hallway to try and get help (as I was living on my own at the time), but I started getting tingling in my fingers and I could not dial the numbers on the telephone. I then started to get tingling throughout the rest of my body and could not stand and eventually collapsed and I remember thinking this is it; I am going to die. The next thing I remember is waking up in ITU at Crawley Hospital wondering where I was. I was later told that I was found early on Monday morning by two of my work colleagues, as they were concerned when I had not arrived at the office.  When I was discovered, I was very hypothermic, as I had lain on the floor for over a day.  It was ‘touch and go’ in the ambulance and at A & E. I was assessed by loads of doctors who undertook various tests including a MRI scan.  I was told that I had a slight swelling on my neck and after a small operation I would be okay. I was transferred to the local Neurological Centre for this.  When I got there I was told that they thought I had Guillain Barre Syndrome (GBS), but the doctors wanted to do more tests.  I was asked loads of questions. I remember being told that I might need to be ventilated, as my breathing was getting harder.  I then woke up a few days later having missed Easter on a ventilator, very disorientated, and not knowing what was true and what was not.  I have very vivid memories of going to Manchester and Scotland for tests which I know I did not and other very strange hallucinations which I now know to be quite common with GBS.  I know I was treated with Steroids and Immuglobin, but I do not know how quickly I received this as my symptoms kept changing; as one day I would have an knee/ankle reflex and the next day I did not. After a lot more tests comprising several MRI scans, Nerve Conduction Tests, Nerve and Muscle Biopsy, three Lumbar Punctures my diagnosis was finally decided as Guillain Barre Syndrome and Transverse Myelitis after a complication with the Mumps Virus. The doctors kept asking me if I had had mumps, but as far as I am aware, I didn’t.  I was weaned off the ventilator very slowly and finally came off it in June 1999. Unfortunately, I developed a severe pressure sore so I was confined to bed-rest and was not able to undertake my rehabilitation until February 2001.  By this time I was in the Spinal Unit at Stoke Mandeville Hospital.  I had gained movement in my left arm only, but no real finger movement; only a flicker in the second and third fingers of my left hand. I am now confined to an electric wheelchair and have a 24-hour carer and live in an adapted two-bedroom bungalow.  I manage to eat with a feeding strap, use a computer with a typing splint and write with a writing splint and do other daily tasks with splints.  I have also been left with several other problems, including severe pain in my right shoulder (I have had an operation on this as it was dislocated whilst I was on bed rest).  I also have patchy sensation in both of my legs and a tingling feeling all of the time and a feeling that my legs are being “strangled.”  I still only have movement in my left arm and head and neck.    The reason for me writing is that I have been told by my Neurologist that I am unique as he has researched my case with other Neurologists and also on the internet and has been unable to find any record of other combined cases.  I have also read articles both in the GBS magazine and website and also the Transverse Myelitis Support Group magazine and website and have not come across any similar case to me.  I would be very interested to hear from anyone with similar experience to me and has been diagnosed with both Guillain Barre Syndrome and Transverse Myelitis and would be grateful if you could contact me either by e.mail tsdempsey[AT SIGN]hotmail.com or by post to 30 Park Terrace East Horsham West Sussex RH13 5DN.

Top of page

---

Go to Next Page
Go to Previous Page
Go to Newsletter Index
Go to Main Page