Hi again, glad you feel a bit better. I know how scary this can be. Below is an explanation of what is likely to happen at your first visit… hope it helps. (I’ve been meaning to write this out and save it for ages, so I can use as copy-and-paste… and you inspired me to do it!).
1st visit to neuro
Firstly, make a list of your main symptoms and how they affect you. Don’t make the list too long… the neuro will not have the patience to read it all and might think you are suffering from health anxiety. So keep the list short and to the point. Do not rely on memory… it’s very easy to forget everything once you are there!
Do NOT tell the neuro that you have been on the internet and believe you have MS (or PPMS). They hate self-diagnosis and will not take you seriously.
They will go through your health history with you… so if you can remember any episodes of unexplained symptoms in the past make a note of them… it will help.
They will give you a physical exam… but nothing that is painful or invasive. They will look in your eyes, test your reflexes, look at your muscle function, etc.
There is not one single test for MS. They look at a combination of things together… a bit like putting a puzzle together… so they will look at your symptoms, results of the physical tests, an MRI and possibly an LP (explained below). So be prepared for a long wait for a diagnosis (dx) if indeed it does turn out to be MS.
IF they think your symptoms are neurological (ie MS), they will ask you to have an MRI (scan of your brain and / or spine). They will refer you for that and it might take a few weeks to get the appointment (sometimes longer) and then you might have to wait a few weeks or even months for the actual appointment. Then another wait for the results.
If they see anything on the MRI that concerns them (they are looking for ‘lesions’ that show that your central nervous system in your brain has affected) they might then be able to dx MS… but quite often even then they are not sure.
If there is nothing showing on your brain, and they have eliminated everything else that can be causing your symptoms, they might ask that you come back in a year or so for another MRI. They will also want to see how your symptoms develop, or not, during that year.
If, even after seeing lesions on your brain, they are still unsure, they might then ask you to have a lumbar puncture. Again, a wait for an appointment date, then a wait for the appointment, then a wait for the result.
I’m sure you are getting the picture here… it’s one hell of a waiting game!!!
The lumbar puncture (LP) is to see if your immune system has been at work in your central nervous system (in the brain) but not in your blood. So they take a blood test and then take some spinal fluid from the base of your spine. If the blood is clear but there are ‘oligoclonal bands’ in your spinal fluid they will most probably dx MS (there are a few other conditions where this could happen… but if they have already suspected MS this will confirm their suspicions).
To dx PPMS, they will probably want to monitor you for a year or so to see how your MS progresses and if you have any definite relapses. Sometimes because of your history they can dx PPMS at this point, but for most people there’s another wait.
Very occasionally people do get dx with MS much quicker. This is when their symptoms are aggressive and present very much like MS. For most people it takes anything from a few months (unusual) to a year or two (more usual) to even longer.
So… a lot to take in. But by going to see a neuro you have started the first step of this journey. While all this is going on, take good care of yourself. Remember, anxiety makes symptoms worse… so get plent or rest and try to take a ‘one day at a time’ approach.
Hope this helps, (and hasn’t put you to sleep… )