I am a 65 year old male who has lived with back problems since 1973. In mid 1986 while holidaying in Oregon, I went white water rafting on the Rogue River on an inner tube. Unfortunately I was thrown off and hurt my spine. My legs were paralysed for a period of about 20 minutes, but I still managed, by the grace of God, to get down the rest of the river using my only my upper body. At that time I did not attend hospital.
In Late 1987 I stretched in bed and an unbearable pain travelled up my spine to my head. This resulted in a period of 6 weeks where I was unable to work. I was sent to Bridge of Earn Hospital in Scotland. A nurse walked straight passed me as I was lying in agony on the floor. They were useless. Finally I got back on my feet, thanks to a brilliant Sports Medicine Chiropractor from Dundee.
During 1988 we moved to Australia to live. In 1989 I had a motor vehicle accident that again exacerbated my back problem. 1995 was when I was given spinal manipulation and fitted with an upper body brace.
I completed, very successfully, in 1996 an RPA Pain Management Clinic programme. It was excellent, covering all of the different aspects. In the main, the clinicians were excellent too.
Now came 1997 and a Bilateral Facet Block at RPA Hospital. This was a total waste of time.
I was diagnosed in 1999 with severe disc degeneration, L2-3, and fitted with a Poly Spinal Jacket made to exact measurement by being put in a plaster cast. This was very scary.
I had X-rays, CT Scans, Discograms, Bone Scans, MRI’s, blood tests and Psych Tests multiple times during the period 1973 – 1999.
From this period forward my mobility went downhill. I was unable to lift my legs to climb ladders during a period when I was doing consultancy work for a large distribution company. This resulted in me being unable to work, and in 2000 I was placed on a Disability Support Pension, The Centrelink Doctor was astounded that I had been able to work that long.
My journey with SPS I believe, began around 1997 then aged 50. It manifested itself by my lack of ability to move any part of my body apart from my head when lying on the floor, something I frequently did to relieve back pain, This was very alarming. I mentioned this to my excellent physiotherapist during my treatment. She then arranged for me to see a specialist at Royal North Shore Hospital. What a waste of time. While driving my car, I would often lose the ability to move my legs without lifting them with my hands making. breaking or accelerating more difficult. This got progressively worse through time, to the point I knew something was wrong.
October 2004 I was lying in bed at night and I was unable to move my legs, and had severe tremors. It was terrifying, so much so, that we called an ambulance and I was hospitalised.
During my time in hospital I was found to be severely B12 deficient, and was suffering from Subacute Combined Degeneration of the Spine. This was diagnosed by a myriad of tests including standing upright, legs together and eyes closed. I just fell over. Another test was to sit on the edge of the bed, arms folded and try and get up, I could not.
This is when I was started on a monthly regime of intra muscular injections. All was good for about 3 months, and then the stiff muscles, ataxia cramps, loss of various movements, oedema etc. Started. So my Neurologist increased the injections to fortnightly. He was just not listening to my concerns. He had diagnosed my condition. End of story! We were not impressed.
I was then put on an weekly exercise programme at the Rehab department of my local hospital by my Rehab Specialist. Oh, and by the way, I was told I was not allowed to drive. I had already been told that in hospital by umpteen other Doctors. At this time I was put on Baclofen, which I was unable to tolerate.
I started to get on with my life, bought myself a mobility scooter to get around on and then I started to have intermittent paralysis of both legs, arms and hands. I could not eat a meal without triggering an incidences of the arm paralysis. This meant I was unable to go anywhere without a carer, in most cases my wife, taking me and I was not allowed to use my scooter any longer.
Early 2007 we decided to ask for a second opinion so we went to a Neurologist recommended by my GP there I underwent further tests MRI, SSEP (evoked potentials), Nerve conduction tests EMG, specialised Blood tests. All were normal, so of course what does the good DR say? "It’s all in your head." My own GP and the people who saw me at Rehab did not agree with this diagnosis, so I had further Nerve Conduction Tests they too were normal.
2008 to enable me to again control my situation, I was scripted by Paraquad and Camden Hospital a powered chair complete with captains chair, tilt mechanism and chin control , it was so good to have regained my independence once again. I nicknamed it THE BEAST, as it is very large.
About late 2009 I was beginning to have upper body seizure episodes in bed. Sometimes they were quite violent. They would be anywhere in from 1 to 8 times and they had different levels of strength and duration. Also, my legs would get incredibly tight and very painful during the later part of the day.
My condition began to improve in regards to my arms and hands, but as soon as I did any exercise, especially in the gym or walking, my legs become very heavy and painful. The paralysis episodes would occur or my legs just collapsed below me. I was then having physio every 2 weeks at my local hospital. This was stopped in late 2012. Now 65, I no longer met the criteria for funding.
During 201I and 2012 I started having very severe upper body spasms. Anything I was carrying would go flying. you should see the ceiling in my lounge where the TV controller has hit it. These were up to 6 times a day at one point and then 5-6 times a week
With prompting from my Lung Specialist, we decided to search for a new Neurologist one who specialised in movement disorders, I searched the internet and found a Neurologist. She was on the Periodic Paralysis International Medical Advisory Council. I sent her an email and after a while she responded to it.
November 2012 and I took delivery of a new manual wheelchair, much improved on the old one, much lighter easier for my wife to handle and fits nicely onto our new wheelchair rack on the rear of the car.
So in December 2012, the real journey of discovery commenced. After a physical examination together with the way I presented, my Neurologist thought I had a variation of Stiff Person Syndrome and at least two other neurological deficit. Blood tests were unremarkable and I have had further EMG testing done. I had needles in My hand, thigh, eyelid and left of my spine. These results, were unremarkable. I have just had a full spine and brain MRI. In the meantime she started me on Gabapentin as I could not tolerate Baclofen or Valium.
About 3 months later, I then started having very severe leg spasms, whole leg and feet twisting violently inward, resulting in episodes of muscles all the way to my hip pulling and becoming very painful,
I then started hydrotherapy on a weekly basis with constant supervision. During this time my condition became much worse with my legs, hands, arms and feet inverting to the point of agony as soon as they were unsupported.
Then in late June I presented to my local hospital in terrible agony but, I had the presence of mind to ask them to contact my Neurologist. This they did, and although on leave she arranged for me to be transferred to one of the top hospitals in Australia under the Professor of Neurology. I was then put through so many tests. There was Ultrasounds, Ct Scans etc. There were further needle, nerve tests. This picked up the Neuro Myotonia. They prescribed Clonezapam which was then changed to 3600mg Gabapentin and 75mg Dantrolene. During this time I was in a very deep depression. I was shell shocked and did not know what was going on. Every time I tried to walk, my legs collapsed below me. I had full body paralysis and was lying in bed very frightening with upper body seizures, throwing things everywhere. Eventually, through medication and my own ability to better control the spasms, things started to get better. Even the geniuses at the hospital would still not give me a definitive diagnosis. I lay between Stiff Person Syndrome and Isaacs’ Syndrome or a syndrome called after me, Stiff Person being the most likely
After 3 weeks I was then transferred back to my local hospital to begin extensive and exhaustive rehabilitation that took a further 5 weeks. They had to teach me to walk again; something we take for granted. This was incredibly hard as you have to retrain the brain again. They also gave me access to a psychologist. This along with the visits from the pastoral care worker, who actually was a friend from my Church, brought me out of my deep depression. During these sessions I really opened up and laid all things bare. I was then allowed to return home but was still having to use my walker or wheelchair and had to have services put in place to shower me etc, this was tough for me as I am a very independent person, and stubborn as a mule..
Now, I have private Physiotherapy going on which has helped me immensely to get fitter and stronger. It took me 6 months to be able to walk confidently without any aid and to walk up some stairs. I am not allowed to walk outside for fear of seizure’s or falling, and I still must have a carer with me at all times. My beloved wife usually fulfils that demanding role.
I have since seen my Neurologist again and we are greatly comforted that any future episodes that require hospitalisation will be at St Vincent’s and nowhere else and, it will be under her care.
The seizure’s and stiff legs are a constant reminder that I have to take it easy. I have to stay safe and not put myself at risk. Outside, I have to be in my wheelchair at all time. A timely warning of this happened the other day. I was sitting in the pub having lunch when I had a seizure. It was so violent that it thrust me backwards. I overbalanced in my wheelchair. My knees hit the table and I was saved from serious injury by my wife and a patron grabbing hold of my chair. This was very frightening!
Although I have concentrated on Back Problems, SPS and Isaacs’ Syndrome, I also have Osteoporosis, Osteo Arthritis, Type 2 Diabetes, diet controlled, Asthma, Biapical Pleural Plaques, Tachycardia, Gastric Reflux and Depression which all require medication and ongoing care and intervention.
My disabilities do not define me and have in many ways been a blessing. It has allowed me to be a very significant part of my grand children’s lives. I can also volunteer in many capacities as well as advocate for others with disabilities along with their carer’s, so often the unseen and unsung heroes of our society. I also have a strong faith. That, and the love and care of my wife is what keeps me going in our daily struggles.
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.