I did like a few coffees a day but after reading various items about ms i thought i would change to decaf. Then doubd outt the only safe method was the swiss water decaf method so i stopped coffee all together AND milk products a t the same time. If i go out for dinner i will have a ‘proper’ coffee, not the instant i had regularly. The last time i had one, it was at about 3pm, that evening my legs felt fine. The next day i thought i would have an instant coffee, same time same thing happened at about 9pm… is this a coincidence or is it the caffeine? Or does ms do this… i havent been diagnosed as yet but what else could i have so i have resigned to the fact i have joined the club…!

Hello tobytyke

Nice to see you on the forum

Better to wait for the test results before deciding it’s MS, I hope it isn’t. There are many conditions/diseases your symptoms could relate to.

When do you expect to get the results?

If you feel some improvement in symptoms when cutting out coffee, that’s good of course.

Take care x

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Already seen the lesions in brain and spine near neck and symptoms are sort of pointing to ms. I have been off coffee for 3 wks but find that the other day after having a cup in the afternoon, i was ok at 9pm… wierd!


coffee aint good for anybody! before i am lynched i am a trained barista-loved that job!

i have 2 cups of coffee a week cos i enjoy the taste and i am not into punishment!

hope u havent got ms but theres worse incurable things like ignorance which is much more common…


I used to love coffee and drank far too much. I find I go off it when not well, I had my last relapse four years ago (now SP) and couldn’t bear coffee for about a year, i now have one every couple of weeks but only if someone makes me one without asking.

Tobytyke have you had a restful evening when you suddenly feel ok at 9pm? If so I would put my money on that rather than the coffee but if it works for you have more coffee

Jan x

I know i am clutching at straws, hoping the caffeine is helping a bit. Its like you say, i rest a few hours and alls better. I will keep off the coffee as i went through the withdrawals about 3 to 4 week ago and dont want to get back on coffee anyway. Not that i drank a lot, probably 3 or 4 cups at most.

Sorry toby

I misread the coffee bit. If you find small amounts of coffee helps then why not!!

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I thought you had misread it too… i will try tonight as not had a coffee… as someone says, probably just cos i have rested a few hours. One sure thing if its not ms i have learnt a lot in the past few months. Like the majority of people who do not have ms or similar, i would not have understood what fatigue meant. i too hope its not ms, but i am as prepared as one can be for the call from the hospital either way.

Nothing wrong with a cup a day specially if it helps you relax for the evening. In fact I think I’ll have a cup now all this coffee talk is making me crave

Many moons ago I had a number of instances of a racing heart my GP put it down to the amount of coffee I drank. I reduced it and started to use decaf but went back to the real stuff within a couple of months, although I never did drink it to excess again.

Jan x

I’ve never been much of a coffee drink but the smell is lovely.

I’m a tea girl! very grumpy in the morning until I’ve had my third cup. Hell will freeze over before I give it up

Fatigue is horrible tobytyke. I wake up on a morning, just as tired as when I went to bed-another

Preparation is good

Its far too late for coffee. When i was in hospital last week the barista at costa tells me a chap ordered an 8 shot coffee at 8pm… i asked if it was for a dr to which she replied no, it was a patient. I bet he was on sleeping tabs as well that evening, donut.

My useless neuro told me whilst in relapse to drink more coffee when I said I was so fatigued I couldnt function. I had just been diagnoised so actually thought about it for a few days…guess who has a new neurologist. Xx


Don’t wish to sound pessimistic but there are many illnesses that mimic MS symptoms.

A friend of mine was ill a few years ago and I would have sworn it was MS.

It took 18 months for diagnosis, he was diagnosed with CJD, not sure what it is but don’t be in too much of a hurry to join the club.

It may be something curable.

Best wishes.


I only drink decaf coffee…about two cups a day…caffeinated coffee makes my ms symptoms worse…immediately I can feel effects…increased sweating…jittery…v.warm and difficulty sleeping… therefore stay away from caffeine

Morning Ronin Hope you are doing ok and getting on well with the hoist? Not seen you on the forum for a while. Take care x

i wouldn`t call 7 years too much of a hurry! I really hope its not ms but with lesions showing on mri scan in more than one place and my legs spasticating (nice term) after 10 mins walking it looks more than likely. I have decided caffeine is not for me now anyway, only have a one off when out for a meal.

As for Baclofen, i have been taking for almost 2 weeks anf am seriously thinking of coming off that. No difference at all with 5mg 3 times a day.

Hello tobytike. Perhaps you need a higher dose of the baclofen? I don’t take it, so not sure. See your gp for a review of medication maybe. Take care x

think i would take others over certain types of CJD. But thanks for adding this to the mix!

is there anyone in the UK allowed Sativex from GWP on prescription? Just curious…

Don’t worry toby, you can rule out CJD xx