Well, I had my appointment with the new island Neurologist on the 23rd September. Apparently my left leg is weaker than my right and I have nystagmus in my left eye. As I have had no specific relapses since 2012 but residual symptoms he said I was now moving into Secondary Progressive MS from Relapsing Remitting. This means that symptoms may fluctuate but any changes are likely to be permanent rather than go into a full remission. Between 50 - 66% people with R/R MS this occurs between 10 - 15 years after diagnosis - and I was first diagnosed in 2003. I still have continuous numbness and pain in both feet so cannot walk far. Imagine walking barefoot on a shingle beach all the time and it will give you some idea of the sensation. I also have numbness in my fingers and palms and tend to drop things quite often - at least I have got used to the hand controls in 'Bertie' now.
The Neurologist was very impressed with my typed list of 'top to toe' MS symptoms which is a good tip for anyone seeing a new doctor - I encouraged him to have it scanned in to my notes in case they need it for the DWP when I need to claim my PIP in the future. If you rarely see a doctor they are hardly likely to remember you and what worries you most. Another tip is to take a copy of your repeat prescription list so they know what medications your GP has put you on since you were last seen - remember to jot down any non repeat items you take. We discussed the research proving that Vitamin D can help slow the progression of MS symptoms - I had already seen the studies he mentioned and have been taking 15,000mcg Vit D3 daily during the winter months and loved being out in the beautiful sunny summer we have just enjoyed. MS occurs more frequently in the Northern hemisphere and even in the UK rates are higher in Scotland. I was a Night Nurse for many years and for a week at time in the winter didn't even see daylight, and like many others with MS I was born in the late spring/early summer, after a very cold winter - it is believed there is a maternal link to low Vit D levels through diet or environment during pregnancy.
Another drug he was recommending were statins - being a diabetic I have been taking Simvastatin since 2002 and some studies are indicating that statins can prevent cerebral atrophy and new lesions forming on the brain. This research paper in the Lancet describes it in more detail although with a sample of only 140 participants it was a small study.
So, that was this years appointment, he is happy to see me once a year with my MS Nurse in between and I can live with that. Just keep taking the tablets (and injections!) then.
