Inclusion myositis conclusion

[Arthur42]

Can any one give me some advice I have been diagnosed with inclusion bodily myositis any please thankyou

[Catpuss66]

best to ask the question on myositis uk Facebook page, much more active than here.facebook.com/groups/themyos...

[InspireMe in reply to Catpuss66]

We really need to kindly bear in mind that not everyone is on Facebook and perhaps instead encourage engagement here too. We can do it!!!

[Catpuss66 in reply to InspireMe]

glad you replied even if it was only to have a go at me.

[InspireMe in reply to Catpuss66]

I wasn’t having a go at you at all and if it came across that way then please accept my humble apology. The message was that we should promote both platforms as it has been mentioned here before. Take care.

[Catpuss66 in reply to InspireMe]

apology accepted, I saw the op had been waiting over 18hrs for a reply so felt they would get a quicker response from the FB group.

[Mustgetaroundtoit]

Hi Arthur42! Sorry to hear about your diagnosis. Several years down the line since my diagnosis(Polymiositis)& although I have symptoms, the inflammation is, according to my blood tests, under control. I have a different Rheumatologist who I have only seen a couple of times, but she is v confident, & in fact says that ppl are "scared by big words,&she's treated loads of people "(!) I'm not sure how much I'm going to agree with her views (my 1st Rheumatologist was v sympathetic, but also straight to the point,so ideal-she's moved to a different area).I'm actually seeing her in the morning, so I can pass on any gems of wisdom, if she has any new ones for me!

Currently, I have to say be kind to yourself, don't panic and be prepared to try any drugs they suggest for you!

Good luck and hang in there!

[InspireMe]

Hi Arthur42

[InspireMe]

I was diagnosed with IBM three years ago and my advise would be ensure you maintain all your follow up appointments with your neurologist and also ensure you have an occupational therapist and a physiotherapist onboard.

Everyone has a different journey but ensure you take one day at a time as I find no two days are the same. So as you progress you will have good and bad days so I wish you all the best.

[Wickety]

Hi Arthur 42, Sorry to hear you have had this diagnosis. I got the same news in 2019 after repeatedly trying to get my symptoms recognised from 2016 (some in the NHS even suggesting it was no more than anxiety) I was told that there was no treatment, no medication to help the condition and to self refer for physiotherapy which I did - only to be told my local provider had nobody trained to treat my situation. I decided to look online and picked some tips up from there. It's important to keep as much muscle as possible. I did have a visit from occupational health advisor who arranged a couple of basic aids but no more than that. I self funded low level showers and other items I hoped might help.I have tried and failed on several occasions to get my neurologist to give me a trial of immunotherapy and steroids. It's like asking for the recipe to turn lead into gold. There are some clinical trials ongoing at the moment but so far nothing seems to be able to combat this thing we have.

All I can really suggest is keep asking your doctor's what they can do for you, be prepared for knock backs. Don't give up. Hopefully science will find an answer.

I also have other auto immune problems but nobody will confirm they may all have a common link.

Try and be positive despite what might seem like a pretty negative situation.

Regards

[Frost111 in reply to Wickety]

The NHS is a bloody disgrace. Why won't they give you corticosteroids and immunisuppressants if you've received a diagnosis?

[Wickety in reply to Frost111]

Hi Frost111,I don't think the NHS is a disgrace, the problem may be that once a patient is diagnosed with a condition that's considered incurable or untreatable then the medical profession run out of options to deal with you. They won't give the immunosuppressant and steroids using the excuse "it may not work". I wonder if they are worried about being sued if the treatment goes wrong?. I suppose the individual Drs would have to explain the reasoning - but they don't. I liken it to being put into a box and forgotten about. I can't offer any suggestion to resolve the problem.

Going private is not an option that appeals to me e simply because of cost.

DNA may come up with some root causes but when is one of the unknowns in the puzzle.

Regards