After weeks of tests, tests and more tests leaving the doctors baffled as nobody knew what has caused this or what this actually was she was then finally diagnosed her with a rare disease called transverse myelitis.....
Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.
Helen has been in roockwood hospital since October and is receiving intense physio everyday! She is a very strong women and we are all very proud of her.
Transverse myelitis is rare. Up-to-date figures are not available, but it is estimated that there are about 300 new cases in the UK each year.
the disease has paralysed Helen from the chest down and affected at c4 level of her spine can't use her hands properly or move any where else now classed as a tetraplegic, this has been a crazy few months and for something like this to happen so sudden is scary.
I want to raise as much money as I can for us as a family to get together to help her with any facilities, equipment or household help she needs! Hoping we can all get together and do this for this wondeful sister of mine!
Hi Helen, I saw your story on Self. I wanted to let you know I also have TM and my story is incredibly similar. It was also an acute onset and then all the tests, all which came back "normal," which is astounding considering the severity of our conditions!! Mine happened many years ago and my progress was slow so please keep working at it. I recovered about 90-95%, just some leftover damage in one foot. Your body can heal. I wound up having a relapse a few years ago, this time not full paralysis but it was the rapid onset again and I have been dealing with a lesser but debilitating version with leg weakness and many neuro symptoms. I wound up testing positive for Lyme with a tick specialty lab here in the US. I wanted to relay this to you, as I never saw a tick, never got a rash and tested negative on the crummy standard testing. Doctors are simply not up to date on Lyme and they overlook it. If an infection is fueling your TM it is helpful to know, as you need to also treat that underlying infection then to speed up your progress. Best of luck to you and if you ever want to reach out for more info, if I can help, please do. I have had to research both conditions now more than I ever wanted to!
We did a coffee morning at Pencoed Swimming Pool at Christmas time and we have decided to donate the money raised to Helen and Transverse Myelitis. Get well soon and best wishes for your recovery, from Pencoed Swimming Pool xxx
as helens mum, i would like to thank everyone for their support and well wishes, xxx never in a million years did i ever think I/we would wake up to something like this one day, trying to understand, cope and realise what is happening is unreal. Helen (as with my other two children) has always been hardworking, healthy, and always positive, but this has really knocked us all for 6, and at the moment still trying to undertand and believe this is happening, Helen is right in her status you dont know whats round the corner, she is being so strong in all of this, and we dont know the half of what is going on in her head or what she is going through, and she has a long way to go yet, as the saying goes "live life to the fullest" Love you loads Helen ♥
Get yourself tested for Lyme disease! Get a NHS test and a Armin test done. Similar happened to me. Came back from Ibiza very sick turned out be Lyme disease. Get better soon and do join the Lyme uk group for any support x
Might be worth getting yourself tested for Lyme disease. Not the NHS test either get a lab abroad to do it. More info on Lyme Disease UK Facebook forum. Good luck x
Hi Helen, I'm so sorry this has happened to you. Somebody posted your story on the lyme disease forum, I wondered whether you have been tested for lyme disease? It took years for me to get a diagnosis after developing many neurological symptoms. There is a great fb group if you want more info lyme disease UK. It is tricky to diagnose. Good luck with your recovery xx