It was suggested that I should see a psychiatrist to help me come to terms with, and accept the fact, that I had the dreaded SMS. To be fair, my neurologist (Alec Ming) was trying to do his best for me. I turned up for my first visit and was greeted by the psychiatrist, a whisperer who seemed to think that if he spoke in a normal voice we would be overheard. He also spoke very slowly. Perhaps his battery needed charging. I would have offered to do it, but that may have been a bit rude. Anyway, I had to keep saying “pardon?” despite the fact I was leaning as far forward in the chair as I could without falling off.
The 45 minute session ended (thank the Lord). As I got up to leave, he told me: “There will be no barrier between us when you come for your next visit”. When I asked what he meant, he replied: “The clipboard”. The look I gave him was one of utter disbelief. I was shocked and speechless (a first for me). I just said “OK”. The next session, a couple of weeks later, was no better. He had a trainee with him. I can’t remember what we talked about, but at the end of the session he asked if there was anything he could do for me. He was neither impressed, nor did he see the funny side of things, when I replied: “A bacon sandwich and a cup of coffee please.” It was then we both decided there was no point in continuing with the programme. As I left the hospital, I remember thinking the guy was as mad as a box of frogs.
My neurologist asked me to go to the National Neurological Hospital in London. I readily agreed as I thought I would be having further investigations, or perhaps a second opinion. Progress — though to where I knew not. But it was still progress. The downside — I had to stop taking diazepam, which made it more difficult to travel as I had the spasms back, the anxiety and the stiffness. When I got there, I was seen and paraded in front of a room full of trainee doctors — and sent home! A 400-mile round-trip journey for nothing. I just couldn't believe it. But at least I got (a brief) chance to discuss with the neurologist my plans to form a support group. He (in front of the trainee doctors) showed great interest and said he would forward my details to other sufferers.
I wrote to the neurologist in London to ask if he had made any progress. He didn't even do me the courtesy of a reply.
I wrote again. Again, no answer. Not a person to give up easily (ask the Jehovah's Witnesses who called and ended up having to make excuses to leave), I asked my original neurologist if he would look into it for me, which he did, and he received a reply by telephone from a secretary saying they could not help. Dead end. The Stiff Man has been stiffed! I decided to go it alone. I telephoned Daran, who was the contact I had been given by the American sufferer, and he gave me the names of three other SMS sufferers in England with whom he was in touch. I wrote to them and they were all keen to belong to a group that could share knowledge and the strange kind of bond between strangers that a support group would bring.
So, with just five members, the group was born and my newly acquired skill(!) of newsletter writing began. I had heard of a hospital, St Bartholomew’s, also in London, which was doing research into SMS. It was headed by Professor David Leslie. Although primarily a diabetic centre, they had found similarities with regard to GAD antibodies in diabetics and SMS patients. I contacted the research nurse, Pam, and was asked to send a sample of blood to be used in their research programme.
I discussed the support group with Pam and she was, and still is, keen and helpful. She gave my details to other SMS sufferers and the number of members began to creep up. Hardly a tidal wave of "new recruits" but it was one small step for Liz, one giant leap for awareness.
Meanwhile, Dr Walton (bless him) continued to show a very keen interest in my condition. He arranged for me to be videoed with and, a month later, without diazepam. The aim of this exercise was to show what it's really like to doctors, consultants et al at the national diabetic conference. But when I saw the video, I was disappointed as, in my opinion, it just shows a middle-aged woman who cannot walk very well. David didn't agree. He was utterly shocked — and he'd had first hand experience of me "stiff man-ing around”, as he likes to describe it in his typically uncharitable but well meaning way.
Of course, the video had had to be edited to the minimum, but it does not show the sheer terror I was feeling, or reveal that I was dripping with perspiration, or how much I cried and shook. Nor does it show Dr Walton’s colleague taking me there — almost having to carry me. Nor does it show the look of concern and disbelief on Dr Walton’s face as the ordeal began. Perhaps they're all right and it's only me who doesn't get it because I've got it!
But at least there was one benefit — a vigilant nurse at the conference saw it and that led to the discovery of another new member for the support group. If, by showing the video, it helped anyone in any way, then it was worth doing it and, who knows, perhaps after seeing it a little bell may ring in the doctor’s head when a patient presents with symptoms of SMS, and an earlier diagnosis could then be made. At this point I have to say nothing on this earth would make me go through it again — apart from a guaranteed cure!
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.