“These results speak for themselves. The greatest burden of MS is in the symptoms of neurological dysfunction it causes. This is not a definitive survey but gives you an idea of the mountain we need to climb to improve the lives of MSers. To be honest with you none of the treatments we have to target these symptoms is optimised at present; most are only partially effective and they come with significant side effects.”
“What is interesting is the rating of these symptoms with fatigue, walking difficulties and pain topping the chart. Do you agree with this rating?”
Prof G, what do you mean when you say "none of the trestments we have to target these symptoms is optimised at present"?Do you mean that the current existing therapies are not very good, or do you mean the drugs that are being worked in the lab and in trials?Problems with walking, fatigue and pain are truly the big MS issues affecting me. The weather is so hot right now that my symptoms, which are bad even in cool weather, are so much worse. I have never been given advice on how to keep cool by my MS team, especially when we're trying to take advantage of all the free vitamin D on offer at this time of year.
Re: "Do you mean that the current existing therapies are not very good, or do you mean the drugs that are being worked in the lab and in trials?"Yes, I mean existing treatments. Some the work being done in the lab at a pre-clinical level is trying to address the problems we have with current treatments.
Re: "I have never been given advice on how to keep cool by my MS team, especially when we're trying to take advantage of all the free vitamin D on offer at this time of year."No specific advice; it is all common sense. Limit your exposure to warm conditions, don't take hot baths, tepid or cool showers are best, don't wear heavy clothes, go swimming if you can, don't exercise in hot weather, if you can try air-conditioning, keep yourself well hydrated, etc. Some MSers have found NASA cooling suits helpful. Unfortunately, they cost a fortune and are not licensed for use in MS. In addition, the trials showing that they are beneficial have problems. In short it is impossible to do blinded studies with cooling suits.
I would put walking difficulties (is this what you mean by gait? in my case it is the inability to raise my leg sufficiently and reliably) above physical fatigue; I am lucky in that |I don't have pain tho' I understand a lot of people do have it.