Before my diagnosis, I didn’t want to know if I had MS and felt numb when I was told I had it. I was completely overwhelmed with emotion and felt scared about the future – I ran to a field and cried. I’ve since found out from meeting other people living with MS that you can have a long and normal life, and this has helped me feel much more positive and in control.
If I could go back to when I was first diagnosed (back in 2003), I would be a lot more positive and optimistic. There are now lots of support groups and online forums where you can meet other young people in the same situation as you, who are living a normal life many years after their MS diagnosis.
Don’t let hesitation get in the way of your MS diagnosis.
MS progresses from the earliest stages, even before you might notice symptoms or receive a diagnosis. So, the sooner you find out if you have MS, the earlier you can treat it. Getting the best healthcare and treatment plan in place right from the start can help you now and in the future.
I wish I’d been more diligent after my first relapse. I was very much in denial and didn’t want to deal with the reality of learning to live with MS. I often wonder whether I could have slowed my progression down had I not missed my initial neurologist appointment years before my diagnosis, but all I can do is try to be more aware going forward.
My advice would be to try to take your symptoms seriously early on and don’t hide away from it.
The tests for MS. Be informed.
MS affects everyone differently, and symptoms can come and go over many years. This makes diagnosis complex, and it can often seem like a never-ending process, particularly because there is no single test to determine whether you have MS or not. Instead, a number of common tests and assessments are used.
Take an active role in your diagnosis by being informed about these tests: what they involve, why they are done, and what they show. Use your voice to tell your healthcare team about any changes in symptoms you’ve experienced and ask them any questions you might have about the tests involved.
I think if I had been more aware and taken a more active role in my diagnosis, I could have been diagnosed earlier. I received a diagnosis at 27 but I think I have had MS since I was 23. The damage caused by MS was continuing for all that time, and I now have problems with my legs and can’t run anymore.
The first step in diagnosing MS usually occurs when you first notice symptoms, such as vision problems, numbness, or muscle weakness. This often happens during an initial attack of MS symptoms, and during subsequent attacks known as a relapse. A relapse is when symptoms come on suddenly or get worse within hours or days. It lasts for at least 24 hours, with no alternative explanation for the symptoms and no noticeable attack of symptoms during the 30 days before that.
After reporting your initial symptoms to your doctor, they will often refer you for a number of tests and follow-up assessments to confirm the diagnosis. No single test determines whether you have MS, and the tests given will depend on the type of symptoms you’ve been experiencing. You may receive a combination of or all of the following tests:
Your doctor has to go through a number of steps to confirm a diagnosis of MS.
Read about Conor’s and Grace’s experiences of diagnosis below:
I woke up one morning with almost total left-sided paralysis. It persisted, which prompted me to see a doctor. I had a lot of tests at the time, including a CT, MRI, hospital admission, and lumbar puncture, but did not get diagnosed with MS at that time. After this, I had two further relapses. It wasn’t until after my third relapse and more tests that I was diagnosed with relapsing MS. My advice would be to ask lots of questions and seek a second opinion if needed – this will help you get an accurate diagnosis sooner.
I started experiencing a weakness in my legs and kept tripping over things, so I went to see my doctor about it – I had some blood tests at the time, but my doctor told me I seemed fine. So, I carried on with my life and moved to Switzerland, but continued tripping over things. After a while, I started to develop double vision. I went to have an MRI and within 24 hours I was told I had lesions on my brain, which is indicative of MS. I was then given multiple tests and received my diagnosis shortly after. I think if I was more specific when describing my initial symptoms, I would have been diagnosed sooner.
As was the case for Grace and Conor, it takes time to confirm an MS diagnosis, especially during the early stages of MS. However, there have been recent technological advances and improvements in the scientific understanding of MS, which means you can now get answers much sooner than you would have done in the past. You can also help get the answers sooner by being specific when reporting your symptoms, asking lots of questions, and by not being afraid to speak proactively with your healthcare team. Ask for follow-up assessments sooner and a second opinion, if warranted.
Remember: Everyone’s experience of diagnosis will be different – you may need to undergo just a few of the tests or all of them, one or more times, to get an MS diagnosis. Over the past decade, improvements to diagnostic tests mean that the process is much quicker, which will help you get an earlier diagnosis, so you can start managing your MS sooner.
It’s important to talk to your healthcare team about your symptoms. Take an active role in the diagnosis process by keeping a record of your symptoms as and when they happen so you can provide the most accurate information at your next clinic visit.
Knowing how your symptoms change over time is important to help understand the full picture of your MS, and the information you provide will be a huge help to your neurologist in reaching an accurate diagnosis sooner.
Try to be specific when talking about your symptoms. For example, rather than saying I’ve had pain in my hands, say you’ve had prolonged tingling in your hands and fingers, as this is more specific and useful.
MS symptoms can take many forms, so talking with your neurologist about any differences in how you feel is so important. Not everything will be related to your MS, but your doctor and healthcare team need to know as much as they can to ensure you’re receiving the proper care.