I get lots of emails everyday from people experiencing weird symptoms who suspect they may have Multiple Sclerosis (MS). They always ask me what I think. Do I think they have MS? Well, I always explain that I am not a doctor of any sort and cannot give any sort of “reliable” opinion and that they need to get tested. The problem is, they don’t know how to go about this process. Where do they even start? Well that is what I want to talk about; how you typically get diagnosed with MS. So let’s break this down into a few steps that should be taken during the typical diagnosis of MS. Not everyone will experience this the same way; some steps are skipped for one reason or another but generally this is how it goes down.
First; you finally accept that something is not right. You are definitely experiencing something weird. What are these symptoms? The number one thing people do first? GOOGLE. It’s 2015, the internet is everyone’s first step in trying to find something out because there is just so much information online but not all of it is actually reliable! So all this can really do is point you in some general direction because you obviously cannot get an actual diagnosis online. But now you think you may be showing signs of MS so what do you do?
See your doctor. Don’t have one? Then just make an appointment with a primary care physician (PCP). Explain to them what you are experiencing and explain that you would like a referral to a neurologist to simply get another opinion. At the least they can cross it off the list.
When you see a neurologist they will perform some basic tests with you to see what sort of symptoms you may be presenting that you might not even have realized you had! Nothing serious, just really basic tests like checking your reflexes or vision. Easy stuff. After explaining all the symptoms that brought you there in the first place your neurologist may think that MS is a possibility warranting further investigation into the matter. The next thing they will want to do in this case is an MRI.
An MRI? What is an MRI? MRI stands for “Magnetic Resonance Imaging” and is used to take detailed images of tissue (unlike an X-ray which is used for denser material such as bone) like your brain. They may also check your cervical spine (which is basically your neck) but typically they just want to see your brain at first. They need to see your brain because MS causes white spots to appear on your MRI images. These white spots are called lesions or plaques, which are areas of the brain that MS has attacked the myelin. Myelin is a sort of protective insulation, made of a fatty substance, around your nerves that help electrical signals travel across your nerves sort of how an electric wire needs a protective insulation to function properly.
Getting an MRI is simple. You will be sent to radiology (at least that is usually where MRIs are done) and you will get a small locker. Any metal you are wearing (such as a belt or jewelry) and anything in your pockets containing metal (such as a cell phone, keys, or even gum wrapped in foil) must be put in this locker. An MRI machine is a giant magnet and anything made of metal could damage the machine or injure you. You will lie on a table attached to the MRI machine where you will get ear plugs (and possibly special headphones to go over your ears that may even play music of your choice) and then a piece of plastic goes over your head with a small mirror on it that will allow you to see out towards your feet while in the MRI machine and also to help you keep your head steady. Any movement will blur the images so you have to keep as still as you can just like if someone was taking your picture at a party! If your neurologist ordered an MRI with contrast they will place an IV in your arm and inject a contrast material during the MRI that will help light up certain areas of your brain in the images. Now the table you are lying on will slide into the MRI machine, which is a narrow tube. If you are claustrophobic in an environment like this they can give you medication beforehand to help you relax and ease your anxiety. While the machine is running it will make really loud buzzing and clicking sounds which is why they gave you the ear plugs and headphones. Even with all that you usually can still hear the sounds and I personally have a hard time not smiling because to me they are kind of funny. This process may last around an hour or so depending on what the neurologist ordered. Sometimes you may be in there longer. Something that may make you feel better if you are claustrophobic is that there is a microphone and speaker in the machine so if you need to talk to the technician you can and they will be able to respond. That is it. You are done. It may sound intimidating but it is not so bad, I mean, I am claustrophobic myself but I have never even needed to take any sort of medication; I always do just fine and have even fallen asleep.
In a couple weeks they should call you back in to see your neurologist to review the scan results. A responsible neurologist should actually sit down with you and show you your brain scans but a lot don’t even bother. Either way you can ask for your scans on a disk that you can review on your own computer at home in case you want to see your own brain or simply keep a detailed record of all your tests like me. Let’s say that your MRI scans reveal lesions in your brain, what next?
One of two things usually happens next. Either your neurologist may feel that between your MRI results and your presentation of symptoms that it is obvious you have MS and there is no need to confirm the diagnosis or your neurologist will want to perform a lumbar puncture (LP, sometimes called a spinal tap) to get a definite answer. Let’s assume they want to do an LP.
Don’t scare yourself with the horror stories online telling you it is the most painful test ever. That really is not true… some people are just really dramatic. It really depends on the skill of the doctor performing the procedure; you may feel minor discomfort with a skilled doctor or a more sever discomfort with an inexperienced doctor. I personally do not find an LP to be that bad. Either way, they will either have you lie on your side or sit hunched over a table and then they will inject local anesthetics to numb your lower back. To me this is the most uncomfortable part because you are getting poked a few times with a needle. But again, it is not that bad. After you are all numbed up they will insert another needle into your spine between two vertebrae. You will feel a pressure not a pain. Once in, the needle will allow some of your cerebral spinal fluid (CSF) to leak out into a test tube.
When they have collected enough CSF they should have you lie flat on your back immediately because the worst part of a lumbar puncture is the possible (and likely) headache you will get afterwards. The spinal fluid they took from your back also surrounds your brain and is what your brain is “floating” around in. Standing or sitting up will cause the fluid you still have to sink out of your head and into your spine causing a change in pressure around your brain which causes a headache. If you lie flat then the void left from the removed spinal fluid is more equally distributed across your head and spine and this will help you avoid a headache. In addition drink lots of fluids to help speed up the replenishment of your missing CSF! There are people out there that think lying down and drinking fluid to help avoid a headache is a total myth but it is not. My first neurologist did not stress this and I had the worst headache I have ever had in my life. My current doctor is crazy about this and guess what? No headaches! This is coming from someone who has had many LPs done since my diagnosis. Lie down flat and drink plenty of fluids for 24 hours unless you want to buy into the naysayers in which case I say, enjoy your headache because you WILL get one!
Now I want to tell you about a huge misconception out there. If your LP test comes back negative does that mean you do not have MS? No! If it comes back positive does that mean you have MS? Yes! This test is looking for a specific myelin protein that MS causes to appear in your spinal fluid. You can have MS but if it has not been actively attacking your myelin when you have your LP done there may not be any of that protein in your CSF. Some people have to do multiple LPs to finally get a positive but more than likely if your MRI is convincing enough to indicate MS you will only have to do this once. So again, negative doesn’t necessarily mean you do not have MS but a positive means you do.
So your neurologist says you have MS. The first thing they should do is start you on a medication to manage the disease called a Disease Modifying Therapy (DMT). Usually they give you a few options to choose from and maybe send you home with some literature on these medications so you can take time to weigh the pros and cons of each and make your own educated decision. What is important is that you start something as soon as you can so that you will have less long-term effects of MS and less attacks or “flare ups”.