My history and where I am now
It was June 1999, June the 18th to be precise. How do I remember? Because it was 2 days before my son’s then 8th birthday. 35-years-old and I worked as a conservatory builder, heavy manual work, and besides the odd bout of colds, flu and regular illnesses was fit and well.
I woke in bed one night with the most horrendous cramp type feeling in my right leg, I just could not move it, I had to roll out of bed, couldn’t get up in the normal manner. After self-massaging the leg and hip the pain eased but did not totally go away. I decided that as with the work I did, I had banged into something at work and bruised it, although no visible marks. I went to work the following morning, still in pain but the more I walked the more it loosened and eased.
One of my after work regularities at the time was to go to the local and have that well deserved pint. But not tonight, I had to go shopping for my son’s birthday present, which was the next day. I lived in Lincoln at the time, and could not get around the stores. I managed to buy him his wish, a skateboard, and drove home bypassing the pub!
Now that’s bad!
All evening I was in severe discomfort and because I was working the next day, we let our son open his presents. A joyous moment as with all parents (you know the feeling). That night around 3am, the same pain but 10 times stronger. Cue the ambulance! I was taken to Lincoln County hospital and seen by the A & E doctors. After 3 hours they did x-rays and then decided they were keeping me in because of a suspected hip infection???????
OK, I am no doctor but? I was taken to the orthopaedics ward that morning, still in severe pain. After a few hours the specialist came and said I had a prolapsed disc in my lumber region, he said it was even visible. I was sent for a scan, but all clear. Then sent for a bone scan, but all clear.
After 2 weeks my pain relief was up to about 40% working and nothing could be found. On the Tuesday night of week 3 in hospital, the most terrifying thing in my life happened. Both legs went into spasm, there was horrific pain in my legs and hips, I was fully conscious and aware of everything around me, especially the pain. It was like having an epileptic fit from the waist down! After being heavily sedated for pain, I awoke to find I could not use my legs. I had feeling, but no control.
Bang, in a wheelchair!
I was always the one who used to say ” If I ever end up like that, shoot me” There I was, no prognosis, no diagnosis, a complete mystery to the orthopaedics. After 4 more weeks, with a ton of pain killing and anti-spasm medication, I was sent home in a wheelchair to my house with a referral to 1, a Psychologist and 2, Neurologist. No rehabilitation, just go home. I wanted to die, I could not do anything for myself, I could not bear people feeling sorry for me, I JUST WANTED TO KNOW WHAT WAS WRONG!
Two days after being home, I was re-admitted to the hospital after having uncontrollable spasms. I was in for about a month before the neurologist saw me. He did a full MRI, and took me off to Sheffield Hallamshire, his own hospital. I had EMG tests, but they sent me into spasm. I had lumber punctures and was sent back to Lincoln.
The only thing they could do was some physio and as much pain relief as possible. I ended up on 18 different drugs, totalling 46 tablets a day, including MST and oramorph. After 12 weeks I was discharged on the basis that my pain was under control, and nothing could be found. One month later, the neurologist asked me at an out patients to go in for IVIg. He explained what it was and how it might help, no diagnosis yet, so I agreed.
To be continued, and poetic licence is granted to the publisher
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
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The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.