I was diagnosed with having Transverse-Myelitis in 2011....
By Dr. Paul S, at the Prince Charles Hospital, Aspley, North Brisbane. With this diagnosis, I was able to start on a 'better' drug. One that would lessen the severity of my symptoms; Gabapentin/Neurontin. I had been fighting for this diagnosis for nearly 5-years. What follows, is a history of my chronic-pain... From the beginning...
In Jan-2007 I had just been released from hospital. A few days 'inside' for some tests and things after I had suffered 'chest-pains', while walking. Anyway, on leaving, I was remembering the last words from my examining Doctor.."I recommend you go and get yourself a flu-shot, Glendon you are a "classic''-candidate. I will put it in my report to your GP. Make sure you go and get one asap, OK" - while handing me the letter.. Previously, he queried if I had had a 'flu-shot', to which I replied.. "No sir, never had one"..
I remember it was the next day, and my wife J drove me into the GP's-Clinic - it was only going to take a few minutes - no big deal. I was ushered into the 'clinical-room', where he kept the individual-doses in a refrigerator, then I sat down on a stool and raised my sleeve to reveal my upper-arm. My GP gave me the injection, then told me it might feel like I had a mild case of the Flu for 24-hrs, as casual conversation, and that it was typical for a male-person my height and weight to feel lethargic and be sore around the injection-site for the same period
So, I went home, had dinner, watched some TV then went to bed. I was feeling exhausted. I don't know what time I awoke later that evening, but I was feeling very dizzy. I went to the toilet, had a drink of water then went back to bed. I couldn't know what was to follow. That I was struck down by an acute attack to my body from the inside-out, which (actually)-was my own bodily-defences "adjusting" to the foreign-material coursing through my veins. It was later on that I woke again. But this time, I felt like a passenger in my own body. My left arm was swollen (around the injection-site), and was firm to the touch, red, and it felt like I was on fire! My wife had woken by this time, and from turning the bedside lamp on, could see my plight.
By Dr. Paul S, at the Prince Charles Hospital, Aspley, North Brisbane. With this diagnosis, I was able to start on a 'better' drug. One that would lessen the severity of my symptoms; Gabapentin/Neurontin. I had been fighting for this diagnosis for nearly 5-years. What follows, is a history of my chronic-pain... From the beginning...
In Jan-2007 I had just been released from hospital. A few days 'inside' for some tests and things after I had suffered 'chest-pains', while walking. Anyway, on leaving, I was remembering the last words from my examining Doctor.."I recommend you go and get yourself a flu-shot, Glendon you are a "classic''-candidate. I will put it in my report to your GP. Make sure you go and get one asap, OK" - while handing me the letter.. Previously, he queried if I had had a 'flu-shot', to which I replied.. "No sir, never had one"..
I remember it was the next day, and my wife J drove me into the GP's-Clinic - it was only going to take a few minutes - no big deal. I was ushered into the 'clinical-room', where he kept the individual-doses in a refrigerator, then I sat down on a stool and raised my sleeve to reveal my upper-arm. My GP gave me the injection, then told me it might feel like I had a mild case of the Flu for 24-hrs, as casual conversation, and that it was typical for a male-person my height and weight to feel lethargic and be sore around the injection-site for the same period
So, I went home, had dinner, watched some TV then went to bed. I was feeling exhausted. I don't know what time I awoke later that evening, but I was feeling very dizzy. I went to the toilet, had a drink of water then went back to bed. I couldn't know what was to follow. That I was struck down by an acute attack to my body from the inside-out, which (actually)-was my own bodily-defences "adjusting" to the foreign-material coursing through my veins. It was later on that I woke again. But this time, I felt like a passenger in my own body. My left arm was swollen (around the injection-site), and was firm to the touch, red, and it felt like I was on fire! My wife had woken by this time, and from turning the bedside lamp on, could see my plight.
By early the next morning, the 'site' on my arm was really, very swollen, red and extremely sensitive to touch. My glands were up all over my body, I was 'boiling up' with a temperature of 42deg'C-(as indicated by our Kmart-thermometer). My wife drove me straight back to the GP, so he could take another look at me. He said I had 'cellulitis', around the injection-site. I mentioned the troubles I was having - he then wrote a few notes on a letter, gave it to me and said to go to hospital. While I was enroute - my Dr. said that he would call-ahead to advise of my arrival - a further 15-minutes had elapsed. I needed help to walk into the 'Accident and Emergency' section of the RBWH-[Royal Brisbane and Women's Hospital].
Once I arrived there, I was placed in a wheel-chair in 'Emergency' and my 'obs' were taken by the on-duty nurse. After a few hours had passed, a stretcher-bed was found for me and I was put on some fluids, while the nurses and doctors argued amongst themselves, about what was happening to their new patient - in the fog of my semi-consciousness I could sense my symptoms were changing, now I had started to lose feeling in my left hand, firstly from the two outside-fingers, along the underside of the arm, to the armpit. The onset of numbness continued through my arm and within 24-hrs of the injection, then starting in the toes of my left-foot, and working it's way - inexorably up both my legs into my groin and then, my torso...
Another day had dawned. Numbness, painful 'pins-and-needles' and uncontrollable 'fine-twitching' of my muscles was happening all-at-once, all-over my body! It was bizarre - to be a passenger, trapped inside ones own body. Not knowing what was happening? Or even wondering what could be around the corner? I had many visits from the nurses, checking my blood-pressure, asking me to explain the symptoms, again, and again. More doctors too - asking me to explain the events of the previous 48-hrs. More symptoms had shown themselves too - now my tongue was 'cramping'! Like it was being jerked by electrical-wires or something, down the left-side only. And my voice was losing it's pitch and tone! Inexorably getting higher and higher, and more quiet - it was getting difficult for anybody to hear me talk to them.
After another day [day-3], I was placed into a 'Critical-Care and Infectious-Diseases' Ward of the hospital - as they-[the Doctors], still hadn't discovered exactly 'what-it-was', that was causing me all this drama! and [I guessed, they did not want to 'catch' what ever 'the-hell-it-was', that I had too! I could feel my wife getting scared by this mystery too! As far as my 'battle' was concerned, I was surprised, the numbness had not stopped. It was still there - I was in bed - paralysed from just below my diaphragm - down to my toes! I stayed like that for days...
The frightening thing was...nobody could 'tell me' what was causing these symptoms! Yet in the back of my mind, 'I knew' (what was happening to me). Before the needle - I was OK! ...BUT 'After the needle' - all sorts of crap! ..[me paralysed from just below the diaphragm, down to my toes. All this - (feelings!) - following an immune reaction to the Flu-Vaccination - my first, last and only shot!].
Another day had dawned. Numbness, painful 'pins-and-needles' and uncontrollable 'fine-twitching' of my muscles was happening all-at-once, all-over my body! It was bizarre - to be a passenger, trapped inside ones own body. Not knowing what was happening? Or even wondering what could be around the corner? I had many visits from the nurses, checking my blood-pressure, asking me to explain the symptoms, again, and again. More doctors too - asking me to explain the events of the previous 48-hrs. More symptoms had shown themselves too - now my tongue was 'cramping'! Like it was being jerked by electrical-wires or something, down the left-side only. And my voice was losing it's pitch and tone! Inexorably getting higher and higher, and more quiet - it was getting difficult for anybody to hear me talk to them.
After another day [day-3], I was placed into a 'Critical-Care and Infectious-Diseases' Ward of the hospital - as they-[the Doctors], still hadn't discovered exactly 'what-it-was', that was causing me all this drama! and [I guessed, they did not want to 'catch' what ever 'the-hell-it-was', that I had too! I could feel my wife getting scared by this mystery too! As far as my 'battle' was concerned, I was surprised, the numbness had not stopped. It was still there - I was in bed - paralysed from just below my diaphragm - down to my toes! I stayed like that for days...
The frightening thing was...nobody could 'tell me' what was causing these symptoms! Yet in the back of my mind, 'I knew' (what was happening to me). Before the needle - I was OK! ...BUT 'After the needle' - all sorts of crap! ..[me paralysed from just below the diaphragm, down to my toes. All this - (feelings!) - following an immune reaction to the Flu-Vaccination - my first, last and only shot!].
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I was hospitalised for 8-weeks, and endured many staff-'bedside'-discussions about the state I was in, whether I was going to get better/or worse. Having my dignity eroded by this test and that test, test after test for - bloods, fluids, X-Rays, CT-scans, MRI-scans - all of them - coming back 'negative'. Nothing was showing up! It was suggested by my specialists, that I might have suffered from GBS-[Gillian-Barre-Syndrome]. Transverse-Myelitis was not mentioned until years later-(2009), by a different doctor, in a different hospital!
My heart-felt thanks go to the marvellous physiotherapists of RBH-(Royal Brisbane Hospital), for helping me to walk again! I spent a further 5-anxious months gaining my strength, eventually to the point where I could go to work. I spent the next four years slowly improving, clawing back my physical-capabilities.
July-2011 - September-2012...
Until more recently, when I hurt my back in a minor motor-vehicle-accident. It was the 13th July, 2011 while I was travelling to work. I injured my `sacroiliac-joints` in the hip-[sacrum/coccyx region]. I've been unable to work since then. I have constant and powerful-pain-[7/8 out of 10] all day 24/7 and can sit for between 10-20mins at a time. My sleep is broken by my pain so much, I am only getting about 1-1/2 to 2 hours each time. My Doctors have suggested, that the minor-MVA has 'aggravated' my `underlying-condition` - `TM`, [in Neurosurgeon-Speak]. I agree with their hypotheses.
My heart-felt thanks go to the marvellous physiotherapists of RBH-(Royal Brisbane Hospital), for helping me to walk again! I spent a further 5-anxious months gaining my strength, eventually to the point where I could go to work. I spent the next four years slowly improving, clawing back my physical-capabilities.
July-2011 - September-2012...
Until more recently, when I hurt my back in a minor motor-vehicle-accident. It was the 13th July, 2011 while I was travelling to work. I injured my `sacroiliac-joints` in the hip-[sacrum/coccyx region]. I've been unable to work since then. I have constant and powerful-pain-[7/8 out of 10] all day 24/7 and can sit for between 10-20mins at a time. My sleep is broken by my pain so much, I am only getting about 1-1/2 to 2 hours each time. My Doctors have suggested, that the minor-MVA has 'aggravated' my `underlying-condition` - `TM`, [in Neurosurgeon-Speak]. I agree with their hypotheses.
I have continuing symptoms of painful peripheral-neuralgia, constant pins and needles, numbness in my upper/lower limbs, hands/feet. The [lower]-back-pain is relatively new to me but I've been having physiotherapy for it, including acupuncture which I'll be starting in the near future.
p.s. I love my beautiful wife J-[Woodpuddle] and my three boys-[MG, JD, TJ], for being there for me, through my ordeals. They give me constant inspiration, boundless joy and unconditional love, always..
September 2012 - December 2013...
I have just completed a twelve-week-course, called "LIFE", which was held at the "Professor Tess Cramond Pain Clinic", in the RBWH-(Royal Brisbane and Women's Hospital), Brisbane, Queensland. The program was an invaluable experience for me. I got a lot out of it, I met some really awesome people while doing it too. There was 7-of us participating in the 'clinic'-program which was run every Monday and Wednesday -(9:00AM-3:00PM)- with Physio', Hydro', CBT-[Cognitive-Brain-Therapy], Mind and Body, Sleep-Well, and Nutrition. To name, but a few!
(A lot of effort has been put into this course by the Professionals - behind the scenes! And it's all so the people with '+chronic-pain', like us - CAN reap the benefits)...
Recently, I managed to fall-up-the-stairs at home - cracking 3-ribs! AND I stepped into an `overgrown-with-grass` post-hole - partially tearing my R-Achilles-Tendon! So, at the moment I'm walking with more of a limp, laughing very carefully and gently sleeping on my right-side! I'm under `strict-orders` to, DO NOTHING for 6-WEEKS! -[by order of my GP]... ok Doc.
In March 2012, my husband began to experience what he thought was a very unusual case of constipation which then spread to urinary incontinence. We ended up in the hospital and he eventually went through all the testing, carrying his portable catheter through it all, until we found the disposable kind. He was 43 year old, and an active healthy firefighter, with no other symptoms that he had noticed. In fact it took a third emergency room visit when he finally noticed that his lower back felt a bit tingley. This lead to the right direction being taken and a fear for us, that maybe he had MS, or tumour or something else. He never got full paralysis. We were extremely lucky as his symptoms seemed to come on in a couple of days before we were at an emergency ward for incontinence. This continues to be the main and only symptom, and it has improved. He did have some slower reflexes in his foot and the doctor recommeded not returning to work until we knew things were improving. Now, in October 2012, he has had much improvement but it is very, very slow. He is back at work, but occasionally has to have disposable catheters. Usually this is when, he is overnight some place and he doesn't feel totally comfortable. He doesn't have erectile issues, but can't have an orgasm easiily. This maybe a benefit in some ways! We are a bit alert as to any aches and pains he feels but so far, nothing has been persistant. We are focussed on a full recovery. The goal is one year to the date March 2013. Thanks for sharing your story, thanks for letting us share ours.
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