IBM people, please post: I have just found my... - Myositis UK

Myositis UK
581 members344 posts

IBM people, please post

bon-bon
bon-bon

I have just found my way to the new site. I hope all those with IBM will as well. I miss your helpful posts. I posted on the old site looking for you, but no replies. It probably wasn't being used though I didn't realize it. I think people just don't know there is a new site. It is more difficult to navigate, but I am starting to get around. The U.S. started a new site and it took some time to get used to it as well. I am still learning. Since I am not a Facebook user, I am not seeing much about IBM these days.

12 Replies
oldestnewest
Hidden
Hidden

I have DM, rather than IBM, but just though I'd say hello. I'm also off Facebook and hoping this site holds some good craic and info

Hi Bon-Bon and welcome. I have PM but like you I would want to encourage everyone to use the site. I don't want to use Facebook and feel very isolated in the UK at times with this illness. Hope we can all build the site and help each other. Best wishes. Mary

bon-bon
bon-bon
in reply to Clonmel

Hi Suzedablooze and Mary. We all have a myositis disease, and it helps to be able to share with others what is happening to us and also to get helpful ideas. Most of what I know about IBM, I have learned from this site and the U. S. site. Mary, do you post on the U.S. site? I know there is Mary from U.K. that I see posting. Best, Bonnie

Clonmel
Clonmel
in reply to bon-bon

Hi Bonnie. Yes I do but they have made changes there and it's not working so well. It's great to have our own site in the UK. It's important to find out about how research is working here, I hope this site will grow and prosper. Spread the word. Best wishes. Mary

Hi Mary, I am from Canada, so I rely on U.S. and U.K. for my information. We have started a Myositis Canada, but it is small and no postings so far. We have no clinical trials in Canada and no research on Myositis. That is the goal of our Myositis Canada. For a big country, we are sadly lacking in many ways. Not to say there is no research, just not in Myositis. I have made many friends over the years on both sites and that is where I get all my information. I have been to doctors in the U.S. as well. Best, Bonnie

Hi Bonnie. I know there is a new site in Canada. Hope it grows and helps. Canada seems to have very few Rheumatologists. Mary

Canada seems to have very few specialists, including rheumatologists. Not the best situation. I have gone to doctors in the U.S. and attend the conferences. Bonnie

Hi, i have just joined, not sure what to expect or how to go about anything. Just really keen to get some info on anything that may help with the IBM. I am 64 and male, had this (diagnosed) for two years, probably been clutching my coat tails since 2007/8. So far I have had no help from the NHS, just patted on the head and told to adapt which is not good enough. I have sourced and set up a home gym, still a few bits to go but getting there. I have no intention of rolling over if I can avoid it, so far the medical advice is 'that's too expensive and doesn't work anyway'. Does anyone have any suggestions or glimmers of hope.

Looking forward to any and all responses.

Hidden
Hidden
in reply to greengrid

Hi Greengrid,

I'm nearly 64, male, and was diagnosed with polymyositis early last year. Have you tried the Myositis UK website and Facebook group? You might find some good support there. Cheers.

greengrid
greengrid
in reply to Hidden

Good morning Hidden, I have been to the website and sucked it dry. The social media side of things is a closed book for me, to difficult to sort the wheat etc. I have found that physical exercise is good for me, but it is best done every other day. Done daily the tasks get harder with no benefit, change that and everything improves a fair bit. Other things can be done, just leave the gym alone. Also trying a high protein diet and a cycle which has been a good grin, except for the falling off which i hope is a thing of the past now.

Good luck to you, i hope everything goes as well as it can for you.

I still follow this site, but I usually post on the U.S. site which is very good. I am not a facebook user, but I hear it is good, too. Our Canadian site never made it, unfortunately. Don't hear anything more about it. The leader passed away and that didn't help. I was going to go to the conference in Seattle this year, but it was cancelled due to the virus. They are going to do it virtually. You might be interested. If so, I will tell you how to register.

casinogal
casinogal
in reply to casinogal

I am bon-bon. Guess I changed my name along the way

You may also like...