Hi, I had a private appointment with Dr Mazibrada yesterday after I was told the waiting list to see him to discuss DMTs was over six months.
He is a really nice man and very clear but very sensitive in the things he said. He hadnt read any of my notes, letters or seen any of my scans. I had to tell him I’d had them all sent to him. I basically had to give him a quick overview of things. He then found my scans on his computer and showed them all to me. From what I could count as he talked through the scan there were about 7 or so areas of activity in my brain and he pointed out some ‘black holes’ which were basically just areas where the brain has been destroyed basically. My most recent MRI with contrast showed active disease.
He did very quick, but alot of tests of all of my reflexes – some that i didnt know i had – and tested my balance and everything. He said basically i was absolutely fine. He was very reassuring.
He suggested that the number of attacks a person has from the first one sometimes help to predict how the disease may progress. He said mine seems to have been a first attack where my right eye movement was paralysed 12 years and then 3 attacks in a short space of time from last June to now involving vertigo, my left eye being partly paralysed and then altered sensation in my waist but he seemed to say that this was like one episode.
As a result of all this information he said he would recommend a first line drug to try to control it and briefly discussed beta interferons.
Because of the advice Ive been given on here, I asked if i could have a drug like Lemtrada and after a while of talking about the lower level drugs he said ‘well of course, that is a first line drug too’ . He said basically that i can have whatever i want but that the lower level drugs have minor side effects but the harder ones have serious side effects. I asked what he’d do if i was him and he said have the low level drug, he said he thinks I should try that first. He then said I could move to Lemtrada if I wanted to and that his decision wasnt based on budgets or anything. He thrn said that Lemtrada was an option now but with NHS budgets the way they are he didn’t know how long the funding would be there.
Ive got to have another appt with the MS nurse in Wolverhampton to discuss the treatments. I could start the low level treatment immediately but the other one has a three month waiting list. I think basically the decision is whether i want to sort of tick the disease over or smash it.
He described my ms as mild to moderate which was good to hear as i was scared that he was going to say it was really active and progressive but Im concerned that this position could potentially change quite quickly I imagine?
Ive potentially got alot of thinking to do but reading about some of the beta interferon drugs it suggests that long term evidence suggests the effects may be ‘much bigger than modest’ if you start on them early. Im a 40 year old man, work full time but on reduced hours at the moment and have a 5 year old daughter
I was determined to go down the Lemtrada route but Dr Mazibrada’s advice has made me consider the other options. I told him I didnt want to be disabled and we discussed how we It’d help to get other people’s advice on treatment based on this appointment. Ive already had some great advice about Lemtrada and I wondered if opinions would change based on what Dr Mazibrada said.
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