New to this so not sure I’m in the right place, I’m sure someone will redirect me if I’m not. So, I’ve just been diagnosed with primary progressive ms after a year of GP, hospital and consultant neurologist visits. It came as something of a bolt out of the blue. I’ve just come away from an appointment with the neurologist and I didn’t ask anything I meant to ask such as “what’s the likely progression?” and “what happens next?”. Feeling very foolish.
I’m afraid this is actually quite common. We go in to an appointment with a neurologist and something unexpected is said, such as ‘you have MS’! And we walk out of the appointment saying / thinking ‘what the hell just happened?’ And ‘what was just said?’ We completely forget to ask the relevant questions such as ‘what now?’
You are in the right place, the Newly Diagnosed forum is a good place to start, but obviously there is also Everyday Living and the Primary Progressive Fora too. You will be welcome to join the community at all of them. Any questions you have, chances are that someone will be able to help, even if it’s only to offer support or sympathy.
You should have an MS nurse assigned to you. A good one can be worth at least twice their weight in neurologists. They will help you with access to other helpful services such as physiotherapy and / or occupational therapy. They can also help out with ongoing things like symptoms and drugs to help with those symptoms.
In terms of ‘what is the likely progression?’ And ‘what next?’ I don’t think there is necessarily a simple answer. Everyone is different so it might be (hopefully) that you’ll have slow progression. And what next might be very little change in the short to medium term at least.
The one piece of information that I think everyone with newly diagnosed MS should consider is to get as fit as they possibly can, in particular, try to get your ‘core’ as strong as possible. It could be that you are already quite fit, in which case it might just be a case of making sure you remain that way, but if not, probably the best thing you could do is try to get a referral to physiotherapy. Your MS nurse should be able to help with that.
If you don’t have the contact details of your MS nurse, you could phone your neurologists secretary and ask for the info.
In terms of what happens next with regard to your neurologist, he or she should copy you into a letter to your GP to report on the appointment you’ve just had. That might answer some of your questions in itself. If you do phone the consultants secretary, you could check that this is the case, and ask how long it will take.
Thank you so much for your reply. Loads of really helpful info. I’m not very fit I’m afraid, my balance is very poor and I have drop foot and weak muscles so fall regularly, so I stopped going to the gym. I have a physio appt early next month hopefully I can get some advice. I have a great GP, I’ll talk to her. Thanks again.
I would suggest that action to help your drop foot is very important. Try if you can to get FES mentioned with the physiotherapist. It stands for Functional Electrical Stimulation and is excellent for helping your toes to pick up. This then has a massive impact on your gait (i.e. walking pattern) because when you walk with a dropped foot you do damage to your other muscles, your hips particularly, and you also find that your quadriceps are trying to do more than they are capable of to raise that foot.
Unfortunately, some NHS areas (known as CCGs) will not fund FES, including mine, but try to find out as much as you can from the physio you see. (Your GP isn’t necessarily going to know about FES, but you never know!)
If you can’t get FES, you should still be able to get an orthotic device to help you pick up your foot which might help.
You may also find that there is a physio gym available in your area which you can use. In your position, I would try very hard to improve my core and balance plus try to do something about the foot drop.
Thanks Sue that’s really helpful. I’ll make sure I ask the physio.