caffeine

Toby, l make myself a proper coffee in the morning. Usually, have another later in the morning. l was told it helped with fatigue. l do have a coffee machine - espresso type - but l find it easier to use espresso coffee in a cafetiere - heat a couple of inches of milk in a mug in the microwave - 1min 20 secs - froth it up with a little frother gizmo. Add a spoonful of demerera sugar add the coffee - its wonderful. l buy Bellarom Espressp 100%Arabica grounds - from LIDL - lts better then any of the more expensive ones l have tried. All my friends who visit say it is the best coffee ever. Even a ltalian friend of mine. The rest of the day l drink either water or Redbush tea - which is naturally caffeine free. lf l drink coffee later in the day it does effect my sleep.

Now Sativex - yes l have been using this for about 4yrs - get mine from GP on prescription. Do you get theNew Pathways mag - it is published by MS-UK. Always lots of info- letters from users of Sativex or the real stuff!! lf you don’t read it then l do recommend you subscribe to it. The last edition would interest you - the Welsh Health Minister Mark Drakeford’’ has approved funding for cannabis-based medicine which helps people living with multiple sclerosis’’ ln England, drugs minister Norman Baker has called for the legalisation of cannabis, saying there is growing evidence of the drugs medicinal benefits. lt is valuable to treat conditons such as MS,Glaucoma, chronic neurological pain and the side -effects of chemotherapy and HIV/AIDS treatments.

There is also in the ‘letters’ section a letter from a chap whose wife has MS. His wife has had MS 17years. The last six years she has been taking only LDN - her health has improved and she has not ‘progressed’ in that time. She never gets colds or flu - and her friends with MS who take LDN have found the same. Try and get this issue mag 87. And read this chaps letter titled Cash Cows. l think you will be interested.

l have been on LDN for about 6yrs. Apart from vitamin d3/ b12 - this and Sativex is the only treatment l am on. And l have had SPMS for 32yrs. And l have not progressed in the last 6yrs. Wish l had known about it years ago.

LDN boosts endorphins [ a bit like a good coffee] and because of its immune-boosting properties lets your body heal itself by preventing you getting ill.

Two drugs that the drug companies do not make billions out of - hence his title of ‘Cash Cows’.

I take it you dont live in England if you get sativex on prescription

Yes. live in Worcs.

I was able to try sativex on NHS prescription last year, and I’m in West Sussex.

(…just sorry it did nothing for my symptoms even after building up from 3 to 9 sprays per day )

Dom

i suppose it doesnt work for everyone. what are your symptoms if you dont mind saying.

My Spanish neurologist tells me my symptoms are pointing to MS, although i am waiting for LP band result he says that with the mri and the eye test he is confident it is, asked if i can have this in writing, when asking him for 100% clarification he tells me no one with ms can be given a 100% diagnosis!

I have not yet been told yet it is definite ms, although i am sure myself, then can anyone tell me why last week when my walking was bad after 100 yards, after seeing my GP she tells me to go to a and e to be pumped full of steroids, when still no one has told me it is ms.

I refused the steroids as no one was going to explain why i was taking it. I wasnt acute as after i rest I am ok for another 100 to 200 yards. Is this classed as acute? Anyway, i found out i could have been given the steroids by tablet at home. But the idea of taking something when i havent been told what was wrong with me yet didn`t sound right. I am taking Baclofen but ONLY AFTER the neurologist that was on that day saw me walking after a while. He never asked to see what i walked like after a while I suggested it to him!

After several calls to my very busy Neuro he says he is not sure what i want to do as i refused treatment, ie the steroids, refused he says… He now tells me one of his colleagues told me it was ms, this same doc told me he was waiting for the lp final result and i had not had the eye test done. Therefore, no one has told me for def it is ms until the Spanish guy rings me and tells me it more than likely is!

Am i on my own now senor?

with the way i`m going i may need a wheelchair in 6 weeks, hope i am exaggerating of course but i was sort of ok 10 weeks ago, now i walk like i am on stilts after only a short walk/ bit of work/gardening. I am off work now and need something sorting but my appointment is 1st dec 2014 - to be told what? Have your steroids and shut up!