1993-1996

Time passed and more symptoms manifested themselves. My movements were becoming more and more limited; sounds, touch — anything unexpected kept making me jump like someone had plugged me into a high voltage socket. I also developed an irrational fear of crossing the road. Surely not a reaction to endless jokes about "why did the…?”

I also found I could not bend to cut my toenails, put on socks or fasten my shoes because of hyperlordosis (inward curvature of the lumbar spine). My neck, back and left leg kept stiffening up.

When Chris started school, I could walk across the playground to take him into his classroom, but it was getting more difficult to walk back alone. My back ached constantly and my feet did not seem to want to go where I was pointing them. What on earth was wrong?

I even began to find socialising difficult and started to run out of excuses as to why I couldn’t ‘make it’. It seemed so much worse and that much harder for people to understand because I had been an active member of our local theatre group, and as a member of Junior Chamber I had given talks about my hometown to JC members in Holland and France. I was the one who could ride, swim and dance the night away (though not usually all at the same time).

None of us could understand why my GP couldn't find anything wrong. Neither could the poor old doctor who was as stumped as a man who couldn't get any more stumped. The inevitable conclusion was that it was all in my head, and I was sent to see a psychologist. After three sessions, we all knew it was not going to achieve anything. I then began the rounds of alternative therapies like some poor down and out hunting for tab ends in the gutter — interminable and for little or no reward. In this case, we couldn't even find an empty fag packet. Bottom line: Nothing helped.

October 1997

During my latest trip to my still-stumped GP, he noticed there was a problem with my left leg. He suspected diabetic neuropathy and my always-on-the-ball and ever-wonderful diabetic consultant, Dr Chris Walton, arranged for me to see a neurologist the following week. After his initial examination, he told me I was presenting with a condition called Stiff Man Syndrome. But he also said it was unlikely because it was so rare and in all his years as a neurologist, he had never actually seen a case before. As David and I left his room that evening, somehow I knew, beyond doubt, that what he had suspected would be my diagnosis, my life sentence. I had never felt so frightened in my entire life.

When we got home, I tried very hard to get drunk (not the most sensible and rational thing for a diabetic to do) but, despite my best efforts via copious quantities of any and all the booze I could lay my hands on, I remained stone cold sober. A judge would have been proud of me. Three days later I was admitted to hospital for numerous tests. A week later I was given my diagnosis. The anti-GAD results and electromyogram showed I was indeed suffering from SMS. My second autoimmune condition. What joy! A good pair at poker and my life was the stake.

At least I was relieved to know I was not going mad, but I was still hugely apprehensive of the unknown prognosis of this ridiculously named condition that most men would die for (if it were what they thought it would be, of course). I found myself asking questions in the third person. It could not be me we were discussing. I asked about the prognosis and was told the spasms would get worse until I was bed-bound. I asked what treatments were available and was given anti-depressants (but the only effect they had was to send my blood sugar sky high. Quel trade-off!).

The following day, David and I went to the library and read what was available about SMS — not very much. We also looked on the Internet. We found that diazepam kept coming up as the first line of treatment for the few SMS sufferers who'd actually been diagnosed. I made another appointment with my neurologist and asked him about diazepam, but for some reason, he was reluctant to prescribe it. During the conversation, I realised David and I had obviously done far more research into this condition than he had. It seemed like a case of the partially sighted leading the blind. So I took the bull by the horns and, as politely as I could (under the circumstances), insisted he let me try diazepam.

December 1997

I began taking diazepam on December 15, gradually upping the dosage to find a comfortable level that bordered between symptom relief and narcolepsy. The improvement was astonishing. By Christmas, I was almost my old self (perhaps I am a little mad as I actually enjoyed shopping, preparing, cooking and entertaining 11 people over the holiday!).

Yet I still cannot believe all of this took four years to diagnose! Among other things we found on the net was the name of an SMS sufferer in Baltimore, USA. He was very helpful, and gave me the name of an SMS sufferer in England. It's almost impossible to describe the relief I felt to speak to someone else who understood what I was going through.

 

Stiff Person Syndrome.

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.