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mulligrubs
Hello Everyone,
I've just joined your forum. I would like to know if there is anyone else out there whose case is similar to mine. I've been described as a "medical mystery" among other things so I will try to summarise as best I can. In July 2008 I returned from a holiday in Europe. I was a fit active jogger, walker, went to gym - okay you get the picture. I'm 56 years old. Three days after my return I went for a jog and found my left leg "wasn't right", put it down to jetlag. Tried again later but it was worse. Over the next two months I experienced progressive leg weakness and then admitted to hospital for MRI, spinal tap, Intragam infusion. Diagnosed with transverse myelitis, then GBS, then CIDP. My five MRIs showed nothing. In August this year I got another opinion from an eminent neurologist in Sydney (my neurologist encouraged this). He said I had a spinal cord lesion at about T4 to T6. I am now in Rehab as inpatient to try and improve what strength I still have in my legs. I use a wheelie-walker around the house (sort of drag one leg after the other) and outside I'm in a wheel chair. My Rehab doctor believes my condition was caused by a virus and it is "unlikely" I'll walk independently again. He's given me a nerve block to diminish my clonus. I'm taking Baclofen and Gabapentin to reduce my spasticity. Being in this hospital is helping me come to terms with my disability and I'm hoping by joining this forum you will also help me. I look forward to your responses.
Suzanne
Brisbane
Sarge
Hi Suzanne,

I am one of SCI Australia's Peer Support Officers, as well as this Forum's administrator. What I can tell you as a Peer Support officer is that unfortunately there are quite a few causes of Paraplegia that can not be easily explained, from viruses to "unexpected spinal shock".

One thing you will find whether you have sustained your injury through Medical Mystery, as you put it, or like me in a motor accident (I am also T6 Complete), there are many things of which medical staff are not yet 100% sure!

Prior to my injury I always assumed that bar something like cancer, if you were sick or 'broken' you went to a doctor and he 'fixed' it for you. It actually came as a bit of a shock how many times I heard the phrase "We just don't know" or "Science hasn't sufficiently advanced in that field" from medical staff, who through no fault of their own simply did not have the answers or the knowledge. I guess I was just naive and had never had any problem so severe.

Although it is very unfortunate for you and I am sure you would rather not be a member, I would like to welcome you to the 'community' of the spinal injured, and let you know that if you have any specific queries at all that you need help with, or simply need to chat with someone about anything at all, please don't hesitate to contact either this forum, email me directly via the forum, or contact Spinal Cord Injuries Australia on 02 9661 8855.

Kind Regards cool.gif
mulligrubs
Thank you Sarge for your response. It is greatly appreciated. This is the third forum I've joined in the last year - Transverse Myelitis, CIDP and now this one as I searched for an answer and support for my condition. Like you, I believed that when I first went in to hospital that I would be "fixed" but just got puzzled expressions from the doctors while they infused me with IVIG and steroids. As I'm in Rehab I'm coming to terms with this now but some days it is difficult. I retired only 3 years ago and we travelled to outback Australia and last year to Europe. I had expected to do more travelling but I noticed while I walked everywhere in Europe how disabled "unfriendly" it was, at the time never expecting I would be in that situation myself. I will explore the forum topics further to learn more from those who have already contributed. I would like to hear from other members who have been diagnosed "spinal cord lesion, unknown cause" and if there is any hope for a treatment.
Suzanne

QUOTE (Sarge @ Dec 3 2009, 07:01 PM) *
Hi Suzanne,

I am one of SCI Australia's Peer Support Officers, as well as this Forum's administrator. What I can tell you as a Peer Support officer is that unfortunately there are quite a few causes of Paraplegia that can not be easily explained, from viruses to "unexpected spinal shock".

One thing you will find whether you have sustained your injury through Medical Mystery, as you put it, or like me in a motor accident (I am also T6 Complete), there are many things of which medical staff are not yet 100% sure!

Prior to my injury I always assumed that bar something like cancer, if you were sick or 'broken' you went to a doctor and he 'fixed' it for you. It actually came as a bit of a shock how many times I heard the phrase "We just don't know" or "Science hasn't sufficiently advanced in that field" from medical staff, who through no fault of their own simply did not have the answers or the knowledge. I guess I was just naive and had never had any problem so severe.

Although it is very unfortunate for you and I am sure you would rather not be a member, I would like to welcome you to the 'community' of the spinal injured, and let you know that if you have any specific queries at all that you need help with, or simply need to chat with someone about anything at all, please don't hesitate to contact either this forum, email me directly via the forum, or contact Spinal Cord Injuries Australia on 02 9661 8855.

Kind Regards cool.gif

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