My long awaited Neuro Appointment

Monday 22 June and finally the long awaited big day arrived.

G.P. had refused to help with new symptoms until after seeing the specialist. Total loss of finger control, throbbing & numb feet, greatly increased muscle spasms, (hands, feet, calves and the nasty chest hug) mobility down to 20 metres walking with my stick.

So booked & collected train tickets, booked my scooter on the 9am train. Got up about 5.30 am, tea, breakfast, bath & dress (two hour job these days, not ten minutes) By 7.30 the heavens opened up, (first rain for 10 days or so) Called every Taxi firm, nothing available until 9.15. School time for Mum’s & kids that don’t like the rain either.

8 am - set off on my scooter, had to first go to an ATM to get more cash in case of Taxis at the other end, arrived at the station, soaking wet from knees down. Dumped my scooter at the other end (luckily under cover) & arrived on time for my 10 o’clock appointment.

Outcome, yes my beloved MS is progressing quite quickly, & she thinks that the Myelin previously in my head and lower spine is progressing down to the top of my spinal cord. Nothing further until a new M.R.I. 8th. July, the day after I move. She kindly suggested that I should avoid stress. That in itself is a joke, had to use my 18 month back payment of Living & Mobility P.I.P. and my current monthly P.I.P. just to pay my rent & heating. Have now found a cheaper flat, so there should be some money left over for my hospital visits & O.T. & exercise sessions to get taxis when it is too wet to go on my scooter.

I have a home visit review set up to see if I can get help with carers as I live alone, and struggle with many things. Can’t change a fitted sheet, open any jar or bottle, can’t even squeeze toothpaste, shampoo & bath gel bottles. Three ambulance call outs in the last couple of months after falling at home - thank goodness for my red button.

So although slowly, looks like I am getting someway there to answers, but must stop this now, have been packing boxes & suitcases for three weeks, just kitchen & Bathroom to go, I only manage a little every day, but almost finished.

So take care one and all - Mary x


She kindly suggested that I should avoid stress.

Hi Mary, it’s good she knows about stress and what it can do in MS and warned you. This needs to become the normal thing that neurologists should do. I was at a fatigue group a few months back and the MS nurse said “stress doesn’t effect MS” !