Tomorrow is Stiff Person Awareness Day and I thought I’d try and give you some insight on what it’s like living with Stiff Person Syndrome (SPS)
First of all, it seems as though it’s different for everyone. I’ve spoken to, and met, many people with SPS but no-one has exactly the same symptoms.
Getting diagnosed with SPS is difficult because it’s so rare no-one really knows about it, not even doctors. I was lucky that my consultant had experience of the condition and knew what to look for.
Many people get mis-diagnosed at first, but in fact a few tests can give a positive diagnosis if your doctor has any idea of what he’s dealing with. First up, blood tests. There are certain anti bodies called GAD (Glutamic Acid Decarboxylase Autoantibodies) that attack the immune system. They are common in diabetes type 1 patients, but higher titres are the basis for a diagnosis of SPS. I do not have high GAD anti-bodies.
The next tests are the EMG and NCS. EMG or electromyography tests neuromuscular abnormalities by inserting needles into the muscles and testing them for electrical activity. The NCS or Nerve Conductive Study detects nerve damage and destruction. Positive results from these studies show the damage caused by SPS. They can also come up negative.
Another test, not often performed, is for the Glycine Receptor Anti-body which If present it gives a diagnosis of SPS with PERM (Progressive Encephalomyletis with Rigidity and Mycolonus). Which is what I have.
Stiff Person Syndrome can be misdiagnosed as Parkinson’s Disease, Multiple Sclerosis, fibromyalgia or a pyschomatic illness. Unless a doctor knows anything about the condition it can take on average 6 years to get a proper diagnosis.
Just to make things more complicated, there are five types of SPS.
- classic stiff person syndrome
- focal stiff person syndrome
- jerking stiff person syndrome
- Paroneaplastic Stiff person syndrome (cancer)
Stiff Person Syndrome affects twice as many women as men, hence the name being changed from Stiff Man Syndrome.
How SPS Affects Me
I believe I had symptoms for quite a while before my diagnosis but they were not really a big issue. I’d often feel pain when startled but I though that was normal. I’d get pins and needles a lot, but I also thought that was normal. I suffered from migraines for years and often had Trigeminal Neuralgia which can (kind of) be described as a migraine in your face. These are all signs of a neurlogical impairment but I was not aware.
Then I had my first SPS attack. My body went stiff and completely numb one night while in bed. It was very frightening and I couldn’t do anything. I couldn’t even speak or call for help. I did recover however, and I spoke to my GP who believed I’d had a TIA or mini Stroke and requested a brain scan. Before I had that scan I had another attack that was so bad it left me paralysed for days and I was hospitalised.
I still have these attacks quite regularly now, but my medication helps to keep them from lasting too long. I Still suffer from pins and needles and TN and pain from startles. I can walk for only short periods and then the pain becomes too much or I just stiffen and am unable to move. That’s why I use a wheelchair to get around. I am prone to falling, I feel safer walking in my home because I know there is always something to grab a hold of. I would not be able to walk in an open space.
Stiff Person Awareness
If you have been reading my blog for a while then you’ll probably know that most of this I’ve said before. However, as it is Stiff Person Awareness day I feel that I need to use my platform, my soapbox, my blog to let people know about this incredibly rare and pretty awful condition. There was a time when people didn’t know much about cancer but think about how much researach has been done over the years. Think how many lives have been saved because people talked about it and made others more aware of what the symptoms were like.
It will be a while before even Doctors fully understand and know how to treat Stiff Person Syndrome. Many doctors don’t even believe it exists. So it’s important that people like me raise awareness whenever we can. SPS can be fatal, it can also be treated. But it’s also very rare and often unheard of.
If you would like to know more about Stiff Person Syndrome you can visit the UK and Ireland Website for information.
Previous SPS Posts
- Stiff Person Syndrome and What it Means
- 10 Facts about Stiff Person Syndrome
- I told You I was Ill
- At Least You Don’t Have Cancer
- The Day My Diagnosis Changed
and many, many more because I’ve harped on a lot about it for the last 4 years 😉
BLOGTOBER 2019 POSTS
- Blotgober Day 1 – All You Need is Love
- Blogtober Day 2 – Coppafeel – Breast Cancer Awareness.
- Blogtober Day 3 – Out of Spoons (a poem)
- Blogtober Day 4 – Smile
- Blogtober Day 5 – Autumn Fashion
- Blogtober Day 6 -Baking
- Blogtober Day 7 – missed
- Blogtober Day 8 – The School Run
- Blogtober Day 9 – Avon Give Away
- Blogtober Day 10 – What I’m watching (or have watched) Lately
- Blogtober Day 11 – Blogtober
- Blogtober Day 12 – 6 Reflections on Autumn
- Blogtober Day 13 – Impractical Jokers
- Blogotber Day 14 – Weekly Meal Planning
- Blogtober Day 15 – Everybody Hurts Sometimes
- Blogtober Day 16 –The Horrible Craft Book
- Blogtober Day 17 – missed
- Blogtober Day 18 – Word of the Week – Worry
- Blogtober Day 19 – Christmas Crochet Along
- Blogtober Day 20 – My Sunday Photo – About Me
- Blogtober Day 21 – Momentous Events in the Life of a Cactus – review
- Blogtober Day 22 – missed
- Blogtober Day 23 – Explaining the Different Types of Eating Disorders
- Blogtober Day 24 – Stiff Person Awareness Day 2019