You've just been told you have TM
Being diagnosed with TM is the start of a complex journey. It's often a relief to have a diagnosis because you can start finding out more about your situation. We’re happy that it’s brought you to the our website.
From a health perspective alone, TM is difficult. We know that each case of TM has its own combination of symptoms, duration and recovery. You may be finding it difficult enough dealing with discomfort and pain, but also frustrating or worrying on top of that, having to cope with the medical uncertainty. You wonder, what sort of treatment can you get? How effective will it be? How long will the disorder last? Where are you now in the overall progression of TM? And because of the condition’s rarity, you find that the first health professionals you see don’t or can’t give you straight answers.
As you consider the road ahead, you may also be realising that the diagnosis implies much more than just a medical condition. Your entire life may be changing. You wonder what the effect will be on your job, your partner, your children, your wider family and friends. How will it affect routine daily activities like shopping or longer term events like holidays? Will you fill the role you’ve always filled? Will others be different with you? Who will fill in the gaps? Are they up to it?
Everyone responds to their symptoms, the uncertainty and the change in their lives in ways that are unique. You’ll need to know the sort of person you are. If you are someone used to mastering life and being in control, you are likely to tackle the problem with your usual determination. If you are someone who always needs lots of support, your response will be shaped by that. But at this key juncture, it is important to realise that TM will make new demands on who you are as a person.
Ready or not, you are embarking on one of life’s important passages. You may think it is cold consolation, but like all challenges, it has the potential to make your life richer. Unlike the classic passages in growing up and growing old, it is a relatively rare journey. But you are not alone.
Take a deep breath and compose yourself. Despite the fact that TM affects people in such different ways, you're still certain to find someone in the TM Society with an insight, an experience or a useful nugget of information perfect for sharing with you.
First stops for information
The UK's Brain & Spine Foundation has prepared a 24-page downloadable booklet, called Transverse Myelitis. The booklet is an excellent source of comprehensive information and will probably provide answers to many questions you may have. It is appropriate reading for everyone that needs to know more, including your doctor, your physiotherapist , your family and your friends.
The TM Society has produced a leaflet that you may also find useful, the TM Society Introductory Leaflet.
The TM Society has also produced a write up of Frequently Asked Questions (FAQs). That can be downloaded here.
The website and social media
The About TM... section of our website discusses TM, its causes, symptoms, diagnosis, treatment and prospects for recovery. It includes a short section on related immune-neurological conditions.
Please consider getting in touch with and/or attending a TM Support Group meeting if you can. You will meet others who, like you, have been diagnosed with a rare disease. Not only will you find people that can relate to the bewildering situation that you find yourself in, but equally important, you will discover a line of tips and knowledge that are useful for managing your situation.
Join the TM Society
We welcome anyone with TM to become a member of the TM Society. It's free and it allows us to do several things: