This week has been a Rollercoaster but most of the ride has been positive.
I had an appointment on Tuesday with my Consultant, I was not expecting any big changes or news. However they asked how things have been and I updated them with my symptoms and how things have been. The conclusion is that they think I probably had a relapse in March when I started feeling poorly and had to go off sick.
They have informed me my presentation is not typical so it might take them up to 2 years to establish the Phenotype for my MS. There is a possibility I could be RRMS or Progressive with Relapses but they don’t want to miss the boat to treat early if I am RRMS particularly as I am only 39 and so active before this, so I have now been offered treatment which I have said I am going to take. I need to know I have thrown everything I can at this to avoid further damage to my CNS but I am doing this knowing if I turn out to have progressive it probably won’t work.
I was offered Lemtrada/ Alemtuzumab or Tecfidera/ dimethyl fumarate I have gone for Lemtrada/ Alemtuzumab and will be starting it on the 13th July. I wanted to share this with you all as everyone here has been so supportive and I am feeling so positive to have a chance to calm this thing down.
They have suggested I try Baclofen 5mg for my foot spasms and see how that suits me. My Physio is also going to book an appointment with the orthotic department for me. Physio is going great I am feeling empowered.
The antidepressants are working well I can’t believe I was so reluctant to try them my emotions are now much more stable and I feel much more rational, even when bad things happen I can stay calm talking about them.
I have been referred to the Psychologist, was not initially sure I wanted this but am so glad now. On Thursday my younger sister got referred to a Neurologist by her GP as she has some MS type symptoms. Individually they all have answers but her GP said given the family history (me) it was better to get her checked out. I hope and pray she doesn’t, she is married with two lovely young children. I feel so bad for my poor Mum she has just retired this should be the time of her life and she is now worrying about both her grown up children.
Sorry for the essay, hope everyone is having a good weekend despite the weather.