Last reply 3 years ago
Information!!!

I’ve not eaten for three days (much to the concern of my partner) as the thought of food has made me feel physically ill, so I decided to look on the MS Society website, which again proved to be a waste of time… So Googled “Appetite and MS” and found this site where loads of people have the same lack of appetite…

I have now forced myself to have something to eat and hey, I’ve not thrown up as I thought I would!

Has anyone else found the MS Society (UK) site lacking?

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DJDsouza
3 years ago

Any professional site is bound by clinical tests, so can’t tip the proverbial boat till there’s proper scientific tests available. Whereas blogs can suffer or gain from non proven info
(The Lancet was used in my blog post! 😉
http://djdsouza.wordpress.com/2009/01/12/what-i-do-to-fight-the-effects-of-multiple-sclerosis/


Anonymous
3 years ago

MS Society Canada site. It’s amazing in comparison to others.


graham100
3 years ago

Hi Adam. Do you feel ill for not eating? Iv got a friend that has a very fussy stomach, only eats little bits, wast of time going out for meal, but healthy, I’m stopping eating at the moment because my stomach feels bloated and hurts when I try to walk, hard to explain,, you could try eating nice stuff chocolate etc, long as you keep it down. Good luck, wish you well.


adam1407
3 years ago

Thanks everyone 🙂

@graham100, I’m just not hungry – it’s weird, and the thought of eating makes me feel a bit nauseous, although saying that I enjoyed a really nice Birkenhead Dummy (Greggs sausage roll) yesterday and ate all my dinner later with no problems…

I’ve got the swallowing clinic tomorrow, so I’m going to mention it to them…

@BillyBonza, I’ve just clicked on MS Canada: WOW!!! Got to share that link: https://beta.mssociety.ca/

@DJDsouza, I’m going to try those… 😉 (I’ve also added your link to my very intermittent blog… I hope you don’t mind)

Once again, thanks everyone 🙂


rose54
3 years ago

Yes, I have swallowing issue and I have noticed that food doesn’t taste that well anymore and the smell of certain foods is off. Also, I have nausea sometimes and the thought of food repulses me lately. I am hungry and I do not know what to eat. Frustrating!


cameron
3 years ago

Reading the MS research blog, I was very surprised to note that both the MS Society and MS Trust have received funding from drug companies and have not declared this openly….. I know charitable organisations do good work but I am sick of ‘inspiring’ stories. I’d rather read the issues here, from people who are actually living with MS.


graham100
3 years ago

Cameron. I totally agree.


rose54
3 years ago

Hi Cameron, The MS society in the US is not very good either. I am so happy I found this site, real people! I found another site, but the moderators tend to dominate the conversations and do not really reply, just send you articles from other website as advice. I also noticed that people on the message boards are saying the usual, “your symptoms doesn’t sound like MS”, (all in your head kind of thing). This site seems to have real people sharing real experiences, I appreciate that.


adam1407
3 years ago

Rose – I got that from my first consultant – I had a “penny’s worth of MS”! And was sent to a drug and alcohol psychologist! (I’ve never taken drugs and do not drink any more than anyone else, possibly a bit less!)

My GP was livid and got me referred to my current consultant who actually apologised for his colleague!

You’re all right – it’s better to hear about things from people that actually LIVE with MS than what people THINK it’s like!

I’m so glad that I found this site – I might not come on all the time, (probably like the rest of you, I’m too busy living a life to be reading about something I have to live with 😉 ), but it’s nice to know that there’s a site here if I need it.

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