I had an appointment in March with a neurologist and it was actually quite nice to see someone different. I have been with my consultant since my first big relapse in 2003. He has been so good to Martin and I and when he had to stop doing clinics at my local hospital, I was given the choice, I could stay with him but my appointments would be in Plymouth or I could change over to the neurologist at our local hospital. I knew straight away that I would stay with my consultant as he knew me, no actually he knew us. I'd had his support when Martin was poorly and he's always had my back! But seeing someone different after twelve years was refreshing.....it was a new set of eyes on my case!
First of all he asked if I was on Vitamin D3. I wasn't so he suggested that I start it, at 5000iu a day. He said that he makes sure that all his patients are on it. Apparently there is evidence to suggest that there is a link between low vitamin D3 in your system and MS. I have no opinion either way on it but I am taking it for now to see if it helps to make me feel better!
The next thing that happened was that for the first time I saw my MRI scans! I have never seen them up to that point so it was interesting to see the lesions on the scans. It was also quite liberating because the consultant actually explained to me that where some of the lesions were was the reason I have trouble walking. And he said he also knew that I have a struggle with fatigue, again because of where the lesions were. It was quite amazing because for the first time I actually saw the evidence that I was looking for that shows me that there is the reason that I have Multiple Sclerosis.......silly eh?! 😉
The next thing we talked about was the Tysabri infusions and the fact that I was on a break from them. We discussed how I felt since I'd not been on Tysabri and apart from the increased pain that had started recently, I had been doing pretty well. This was all good but he wasn't happy that I wasn't on any of the DMD's - Disease Modifying Drugs. It meant I wasn't on anything that could help my body fight the progression of the MS. Over the years more DMD's are being tested and approved for use in fighting the disease progressing, mainly for people who have Relapsing Remitting MS.
There are a group of DMD's called Interferons, these include Rebif and Avonex. Then there is a fairly new drug called Tecfidera - BG12.....it was only granted NICE approval in August 2014 to be used for people who have Relapsing Remitting MS. This one is a bit more potent than the Interferons. Then there is Tysabri which is more potent again. There are other drugs as well, these include Campath and Fampridine or Fampyra. These are all designed to help specific symptoms or to help slow down the progression. MS is such a complicated illness and everyone is affected so differently, which makes treating the disease very difficult. There is no "one drug suits all" with MS. Things will work for some but not others and it really is trial and error to find out what works for you. I have tried several and I'm still looking for my "wonder" drug!
As the consultant wasn't happy that I wasn't on anything that could potentially help slow down the progression, he suggested that I start on the reasonably new drug called Tecfidera - BG12. It's not as strong as Tysabri but he felt it was better that I was on something rather than nothing......we agreed and so he set up for me to see one of the MS nurses with a view to starting this drug. There were several plus points to this medication, it is a capsule that is taken twice a day, so no nasty infusions......and the medication gets sent directly to your door, so no trips to the GP or hospital, which sounded good to me!