Hello,
I approached the MS Barts health team for off-label cladribine in January this year. I had to go through the usual protocols, brain and spinal cord MRI and a lumbar puncture. In mid May I had a follow up appointment with the MS consultant.
I was told that I am not eligible because there are no active lesions on my MRI scans and there was no evidence of inflamation in the lumbar puncture. There needs to be evidence that my MS is active before I am eligible for prescribing off-label cladribine.
Yes I was gutted, in fact as he spoke to me I felt as if I had just been thrown onto a scrap heap. Then I thought about things on the journey home and actually I felt quite relieved. If the consultant could see no evidence that my MS is active then actually I am lucky.
I might be disabled, I am medically retired, cannot walk unaided and am the proud owner of a Blue Badge but things could be a lot worse.
Yup things could be a whole lot worse for me, none the less my MS is progressing. 6 years ago I could walk a few hundred metres without a stick, no chance of that today; I must always use a rollator and even then its not very far on a flat even surface. If I bend down then I fall over and I now suffer from fatigue. Just gotta be positive.
Patrick