He sends this drivel out - get him to explain it! In my view, this is medical talk between professionals, and goes into a level of detail most patients neither want nor need to know. The key finding for you is that youâve been diagnosed with RRMS.
An unintended consequence of the drive towards greater patient âtransparencyâ is that many patients are now bombarded with information a layperson canât understand. My guess is this report wasnât addressed to you, but probably your GP, or even a fellow neurologist. Youâve been copied as a âcourtesyâ, but all it does is muddy the waters.
If heâs going to send it out, he should provide the translation as well. Sorry - Iâm not cross with you, Iâm cross with him.
Too many examples of patients receiving this gobbledygook, and fellow MSers then struggling to decipher it.
I know what a few of the terms mean, but not all, and to be honest, Iâm unwilling to do his job for him. It would take me all afternoon to go through it point-by-point, and explain what I know, and Google all the bits I donât.
You could book an appointment with your GP, who would probably be able to translate most of it for you.
Tina is right. This is really a report to your GP.
Some bits can be extracted, but without any detail:
The first four items are about your eyes - all looks normal.
Your reactions look normal.
What you need a professional - like the guy who wrote it it - to explain is the limb movement stuff.
I would be guessing that you are starting to have a wee bit of restricted movement in your left leg.
This could (like could) suggest that somewhere down the line you might just have have restricted movement or even a drop foot.
The cerebellar tremor is what most people call an intention tremor, you move a limb and it goes of in a slightly different direction. This is more like something you have to watch out for, and then work out a coping strategy. I have this problem with my left hand/arm. I have to cut my food up into small chunks and use a fork in my right hand, American style. This way I do not get a hot piece of bacon up my nose, or in my ear.
What you should do:
If you drive, notify the DVLA (legal requirement) and your insurance company (it is a âsignificant changeâ under most contracts).
If you do not drive an automatic car, you need to be thinking about one now (not in some years time when you can no longer use the clutch pedal). I was lucky in that I had driven autos for years before my MS even started. This does meant that you should get a proper explanation of all the bits in the report that relate to left leg function. If it is the right leg that is potentially a problem, this could mean hand controls - using these is something that you can try out if you have a car with cruise control.
Was the letter addressed to you, copied to the GP? Or was it addressed to the GP, copied to you?
If it was addressed to you (copy to GP), I think your neurologist needs a ticking off for writing to a civilian in âdoctor-to-doctorâ shorthand. If the letter was addressed to the GP (copy to you), then I have no quarrel with it - I ask to be copied in on GP letters too, just for info, but I donât expect to understand them if they get technical because theyâre not really for me.
Thereâs nothing wrong with technical shorthand between professionals, but there is a lot wrong with it when used lazily to bamboozle a normal person.
I am sorry to learn of your dx. Try not to fret too much about the terms in the letter. Many of us (me included) have just got on with having MS for years and years without having the slightest idea about all that. Not worth bothering over.