Medical Mysteries

I had heard through the grapevine (ok, the TM Society’s Facebook Page) that there had been a lad with Transverse Myelitis on Channel Five’s Medical Mysteries on Thursday evening. I’d already missed it (thanks to the Little Man Playing Jurassic Lost Worlds) so I had to watch in On Demand.

The story of a young, 19 year old lad called Micheal, really rang a bell with me. Just like me he was feeling ok one minute but finding that he was losing the use of his limbs very quickly.
He was taken to hospital but they sent him home again. This did not happen to me, I was admitted. They didn’t tell me straight away what was wrong me me but after a few tests they knew. For Micheal it took a little longer. After returning to hospital they started testing for Guillain Barres Syndrome which is similar in onset to Transverse Myelitis but slightly more common. I remember that a lot of the student doctors believed that I had Guillain Barres.

Michael was given a lumber puncture, so was I. This is to detect the cause of the condition, particularly useful in Guillain Barres. Also useful is an MRI scan. Like me, it was shown on the MRI that Michael had inflammation in his spinal cord.

The program did not really go into what treatment Michael received once it was discovered he had Transverse Myelitis. I had IV steroids which helped a lot in restoring the strength in both my arms and legs. We saw Michael lying around at home not being able to do much, but then at his appointment at the hospital seven months later, he was walking unaided.

I think it’s good that a condition like Transverse Myelitis can be given airtime like this. It is a very rare condition and so many people have not even heard of it, not even doctors. I guess with it being so rare then the general public don’t really need any awareness because it’s very unlikely to happen to them. Of course it would be useful to know what to look out for, to know what to expect and what to do for the best if it does occur, but sadly, it’s so rare that it’s difficult to say anyway. All cases vary so much.

Awareness really needs to be aimed towards doctors. I’ve heard so many stories where the hospital doesn’t have a clue what’s going on, and so many sufferers being without a diagnosis for weeks, months or even years. Transverse Myelitis is a very scary condition, it must be worse if you have no idea what is happening. There are a crossover in symptoms with Multiple Sclerosis, but the difference lie in the brain, so if only the brain is scanned, then doctors are still no wiser.

I realise how extremely lucky I was in being admitted to a hospital that has one of the leading consultants in the study of Transverse Myelitis. I wasn’t instantly diagnosed but after MS and Guillain Barrs had been ruled out, they knew that I had TM and treated me accordingly.

The support groups have been my lifeline. It’s the place I go where I know that people will understand. Even though every story is different, we have an understanding of each other’s ups and downs.

I would love to be up and walking around after seven months like Michael, sadly the group consensus is that this is a very rare conclusion. It can take much longer for recovery. There is one thing that seems true though, once you get TM, it never really leaves you.


  1. April 10, 2016 / 3:41 pm

    It is great that it featured on Channel Five's Medical Mysteries and raised some awareness. Perhaps as Michael was so young he managed to recover more quickly?

    • April 10, 2016 / 6:12 pm

      Sadly Kara, it doesn't matter what age you are, some babies get it and never recover. Some get it and recover within months, but still have a few ongoing symptoms.

  2. April 10, 2016 / 4:37 pm

    My cousin had Guillane Barr Syndrome when he was very tiny. I remember how awful it was so I cannot imagine what you must be going through with this. Sending you lots of positive strength. x

    • April 10, 2016 / 6:14 pm

      Yes, Guillain Barre syndrome is awful and if not caught early enough can have devastating effects. It's also really rare, but not as rare as TM which is why it's tested for first.

  3. April 11, 2016 / 9:55 am

    Oh I hope you recover too. He was lucky it seems. I love the academic way you have reviewed the programme. Even though they are rare conditions it is good as you say, as the medical community clearly need educating.
    My best friend's son in Ireland got a rare condition and the Dr did not know what to do. The nurse DID but sadly he felt undermined and said "you do your job and I'll do mine" which delayed him going to a bigger hospital, delayed his recovery and meant his kidneys shut down in the meantime which could have been avoided. He still has emotional trauma surrounding it as a result so I agree with you Dr.s need to be clued up on things even if rare xx

    • April 11, 2016 / 10:56 am

      I'm sorry to hear about your friend's son. I'm always fighting in the corner of medical zebra's. Doctors do a brilliant job but they are very doubtful when something presents itself that they are not familiar with. My daughter had a non traumatic neck injury that was ignored because she hadn't fallen, it wasn't until I lied saying that she had fallen that they even scanned her and discovered the problem! Yet, the symptom was common for her rare condition.

  4. April 12, 2016 / 11:41 am

    It's great that the condition was shown on TV but I do wonder sometimes if the 'happy ever after'ending gives a false impression of how serious this is.

    • April 12, 2016 / 10:06 pm

      I do agree, although I'm still at the stage of hoping I will have a happy ever after ending I do realise that it probably won't be like that. I do feel that the program was over-sensationalised too. It doesn't help that the boy and his mum seem to have a liking for appearing on tv programs as well.

  5. April 13, 2016 / 9:12 am

    I hadn't even heard of this so thank you for sharing and I am sending so many positive thoughts your way for your happy ever after.

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