Been diagnosed 2 years now, so I guess you can say that its nearer3 with the symptoms.
Not had a relapse in that time, just a period around Xmas when had bad back spasms/chest pains but apart from that I just feel I am going slowly downhill. If I look at myself 6 months ago and then 6 months before that then a definite decline. I am wobbly all the time now, balance is awful. Fell over in the middle of Exeter at the weekend, embarrassing!!!. Need a stick all the time. I was on Tecfidera for over a year. No side effects at all, just didn’t do anything, so stopped taking it 2 months ago.
Consultant appears to be useless MS Nurse appear to be useless, offer no advice at all. Just go on about drugs and don’t seem to give a monkeys about what I am actually going through. “You’ve got MS, what do you expect” That was the quote that has really thibk that these people are a waste of time.
Latest advice is that consultant thinks I should go on the new Cladribine drug. Anyone had any experiences with this yet. I know it only got licenced 6 months ago. I have no idea if these DMD’s will make me feel better. I am not expecting to be cured, but I don’t want to take something that isn’t going to make any difference. Also unsure about taking 4 tablets over 2 months then nothing for the rest of the year.
I reckon Ive got progressive not relapsing but no-one wants to say anything about how rapidly Ive gone downhill.
Yes I am still angry, still unaccepting of this crap, still confused!!!!!!!
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