The path to diagnosis
Everyone’s experience of diagnosis is different. You may have had a sudden, severe attack which demanded hospital attention and a diagnosis of MS followed very quickly, perhaps within days.
However, MS is often difficult to diagnose so it may have taken you a long time to get to a definite diagnosis. All the symptoms of MS are seen on other health conditions so your doctors had to work out which one you have. This can mean having many tests to rule out other possibilities and then more tests to see if you have MS. It is sometimes a question of watching and waiting to see how your symptoms develop as this can help distinguish MS from other conditions. All this can be very frustrating and worrying but it is quite a common experience.
You may have encountered unusual symptoms over many years and the symptoms went away, largely or completely, and seemed unimportant at the time. Perhaps you found other, very reasonable explanations. For example, being incredibly tired could be due to a new baby in the family. Stumbling more could be due to getting older.
In the end, these episodes may have added up to a worrying collection of oddities so you sought a medical opinion. This may have prompted investigations but it was not possible to correctly diagnose the cause straight away.
You may have been given another diagnosis which later turned out to be wrong or maybe you were told that the cause of your symptoms couldn’t be found. Perhaps this was hard to accept especially if it was years before you were given the correct diagnosis.
It can be hard to understand why your diagnosis took so long but it is often a tricky call to make so usually no one, including you, was to blame.
Tests used in the diagnosis of MS
There’s no simple test for MS which can give you a ‘yes’ or ‘no’ answer like a pregnancy test. Neurologists have to take a multi-pronged approach and use their experience to decide if it’s MS or not. Sometimes, it’s impossible to be absolutely certain. Your neurologist probably asked you about any history of unexplained symptoms and may have ordered tests to rule out other conditions.
The most common next step is to have a scan of your brain and/or spinal cord using MRI (magnetic resonance imaging). This scan can detect the scars used by MS which show up as little white patches and are usually called lesions. Everyone gets more white patches in their brain as they get older so the neurologist has to judge if they are all age-related or possibly due to MS. Sometimes a dye is injected into your vein before the scan as it can help the radiologist and neurologist distinguish between active MS lesions and old areas of scarring.
You may have had a lumbar punction where they take out a small amount of the fluid which bathes your brain and spinal cord. This is analysed in the laboratory and if more protein banks are seen than usual (called oligoclonal bands) this can suggest MS.
You may have had evoked potential tests. This involves putting small electrodes on your head, arms or legs to measure the speed of messages travelling along your nerves from your eyes, ears or skin on your limbs. If the messages are slowed then this may be due to MS.
Your neurologist will have reviewed your test results alongside your medical history to decide if it adds up to a diagnosis