Annual MS review

I went to our local neurological specialist centre today for my annual review. It's timely as I've had a marked deterioration over the last few weeks and been unable to drive and walking as well as balance is affected. Thankfully, there has been a slight improvement over the last few days so I'm hoping that I'll fully recover soon. My first question was about the diagnosis - whether he still thought it was primary progressive MS since the recent episode has been a sort of 'relapse', which I didn't think happened in PPMS. He gave the same answer to me as I've given to others, namely, that disease categories are man made for convenience and the diseases themselves don't always oblige by falling tidily into a nice academic category. Secondly, he said that relapses or similar did happen in PPMS. He wants me to have another MRI scan in about ten weeks time. I can't have it sooner as I've been on steroids which can affect the results of the scan. I've to see him again after that. I found the last MRI scan OK. I was warned about the claustrophobia risks, etc as you're inside a compact vibrating tube, but, I could have fallen asleep if it hadn't been for the noisy vibrations.     He told me that symptoms could take 8 - 12 weeks to resolve, but, it was a good sign that some of the feeling was returning already. My son, being home just now, took me in and actually came into the consultation with me. After that? What do you think?! We went to the West End of Glasgow and had lunch. Male rule no. 1: every event should be marked by eating! (girls send greeting cards - boys eat!).

MS update March 2010

Not been so great recently. I've developed a parasthaesia (partial numbness) in lower limbs, really the lower half of my body. It's one of those annoying things as I can't feel my feet properly, therefore it would be unwise to drive. I contacted the hospital and after they weighed up one or two of the other effects this is causing they decided I should be on some high dosage steroids for five days to try to defuse this and get it back to something like normal. So, steroids. They are used as anti-inflammatory drugs and reduce inflammation in some known ways and other ways that are not fully understood. The side effects are a general feeling of being unwell, a very red face, heart racing and difficulty sleeping and most annoying of all I get hiccoughs (hiccups for those not UK spellers!) which can last for hours and hours and stop me sleeping. I left Susie alone in the bedroom as it must have been driving her totally crazy! So, tonight is the fifth and final dose and I'll be glad to see the back of these tablets. One more day of persistent hiccoughs and then hopefully, normality.

On a positive front, I saw a pain specialist a month ago who adjusted my pain medication and I must report with some measure of delight that my pain control is better than it has been in two years. This has a knock-on effect that I have more energy in the evenings and can get more done. I'm so grateful to the staff at the Beatson in Glasgow who deal with cancer patients, but, also chronic pain patients. It has been a delightful experience. Thank you!