Newly diognosed after first Relapse. Advise re my current symptoms

New diagnosis and before diagnosis
1

Hi guys,

will try and make this as short as possible.

originally 4 years ago I had a case of numbness in my legs and hands and told I had isolated clinical syndrome.

back in April I had some hearing loss in my right ear and a few days later had issues with my balance. Originally thought this was an ear infection and went to my GP who agreed and thought it was Labyrinthitis however a week later I got numbness in my legs and a burning pain from my stomach to my thigh.

went back to GP and asked to be referred back to my neurologist as thought it was related to my isolated clinical syndrome. I did get an appointment at the time but was not for 5weeks so I decided to see my neurologist privately as was much quicker.

by the time my appointment came symptoms had escalated to numbness from my chest all the way down to my toes,having to use a cane to walk, my left side was a lot weaker especially my hand (could not hold a folk to eat), bladder problems (lack of feeling and some urgency to go) and constipation.and what I can describe as brain fog.

My my neurologist said I needed To have a course of methylprednisolone so I started that the next day which was a Friday but had to go back on the Monday to finish the course as the hospital did not have day appointments on weekends for these steroids.but over the weekend o felt even worse and ended up being admitted to hospital for 5 days and also given prednisone tablets which I’m due to finish next week (6 week course in total starting at 60mg decreasing 10mg every week).

While I was in hospital I had and MRI which showed new and active spots on my brain. I also had a lumber puncher.

The neurologist confirmed MS and said I needed to start DMT which we will discuss when I have a follow up appointment next week.

Currently I’m feeling a lot better apart from still having some hearing loss in one ear,some minor numbness in my feet and fingers and some bladder issues remain (now 7 weeks)

Can anyone advise if these symptoms are likely to last ? Most annoying one for me is my bladder

Sorry for being long winded

2

Hi James, firstly sorry that you’ve been diagnosed and that you have troubling symptoms. It’s a lot to take in, I found arming myself with knowledge from a reputable source like Barts blog, here, the MS trust and ShiftMs very useful.

I went to my GP and discussed symptom management treatments, I too had bladder problems and now take Mirabegron (Betmiga) this has returned me back to normal and been a life saver. I use my GP for any help with MS symptoms, like nerve pain relief, bladder etc. My MS nurse for OT and physio and the MS consultant for DMT (disease modifying therapy) I take Tecfidera.

It might be useful for you to look at the MS trust website, they have an comparison table of DMTs so you could have an informed discussion with the consultant next week.

best wishes