Forum

Not another thing to worry about!

Hi Everyone

I signed up hoping to ask members about Sativex and the chances of getting a private prescription - whereby the patient pays for the medication themselves as a trial (for one month I think). I then got a little sidetracked as most people do I’m sure, reading threads and replies for days on end! You soon realise that, when they say everyone with ms suffers differently, that is true and evident. Bearing that in mind, when I say I feel as though I’m getting close to the home run so to speak, that is solely how it’s panned out for me over the last five to ten years, and by no means a typical example. It does help reading all the positive thoughts on here, often from people who have the right to be even more angry and despondent (Jan especially …very brave & just gets on with things). Anyway, it’s getting like a Ronnie Corbett monologue so - the reason for the title of thread … I was reading one thread entitled ‘Evolution …’ from the main topic of PPMS, and was shocked to read one chap saying that the combination of baclofen and ibuprofen, was a suicidal mix of medications. I was prescribed those, paracetamol and codeine for about three years before finally being diagnosed, and always thought they were two of the slightly ‘safer’ drugs. Apart from the baclofen, my ms nurse does wonder why the others were prescribed as I only had nerve pain to begin with - now they are useful for the inevitable muscle pain which comes with years of moving … in all the wrong ways! I’m not pro meds by any means, I tend to think that most for ppms just don’t work very well at all, but I don’t think it helps coming out with random comments like that. Sorry to go on … a bit long for a first post … I blame the ms!

Hi there Bob. Guilty of the evolution & interactions posts.

Some folks have trust in what they are prescribed for an incurable problem. I see people taking a cocktail of medications & think. Surely that isn’t right. By doing my own research, using Grey’s Anatomy & the Internet. Being someone diagnosed with PPMS. Whom has become much worse since seeking medical help.

The exercise & diet direction, I have chosen, is working far better.

My own son has an allergic reaction to nuts, where I can eat them all day. Hayfever & bullshit is what I’m allergic too.

Not once have I been offered physiotherapy or a dietician. It’s always medications for a condition with no cure.

Breathing in the fumes of Vicks has been better for me personally.

Thinking for yourself.

Someone seeing hundreds of people, with different problems, isn’t always right.

The person with the problem, should know what feels better.

Experimenting with different food types & investigating what vitamins & minerals they possess is a tad more of a healthier option. To me, that makes more sense. My legs have gone from pipe cleaners to being able to carry my body weight. From being told I’ll be in a wheelchair permanently & unable to drive again. It’s the opposite. The quality of life is far better. Being able to do what I want, when it feels okay. That’s how I live, each & every day.

From having my life, health, possessions & finances stolen, to getting it all back. Purely by making personal decisions that I feel are right for me in my situation. Ignoring those who want anything you possess.

Apparently I’m told it’s because who’s in government & folks are clueless. How that is related to MS I’ll never know.

It does seem the age of the cowards. Where the dumb get dumber & jealousy creeps in.

I’m off to make a brew & switch my synthesisers on.

Look after yourselves folks. Everyone is different!

Terry

Sorry Bolan I’m not sure how to advise but I hope you get support. Terry your message was excellent I love your advice it’s helpful to read your positive post. Michelle and Frazer xx

Hello Bolan.

Terry and Michelle speak the truth. I’ve always avoided medication, preferring to focus on diet and lifestyle. Reading across the myriad of forums, many people seem fixed on having a medication plan. But for me it ust doesn’t work. Listen to yourself.

I’ve grown stronger over the last three years through a combination of courage, determination and knowing what I need.

Keep in touch with this forum; it’s full of heroes.

Steve