sIBM diagnosis

[TiredSoul10]

Was recently diagnosed with sIBM. How many years before my arms and legs lose functionality? I understand there's no treatment.

[ADP2010]

Was diagnosed with IBM in 2010, think it started in 2006. Slow decline. Am still going however with electrically rising loo seat and wheelchair, also rotatabed,. Live by myself. My priority for years has been not to take risks and fall over. Therefore if in any doubt us sticks, then walker, then wheelchair. All the equipment is there, use as common sense dictates.

[TiredSoul10 in reply to ADP2010]

Mine started with my hands. Couldn't open doors and jars but I've gotten used to it and could manage to do some things now. Is it true medications don't help?

[Tolkein]

Hi my husband was diagnosed about 3 years ago, after a false diagnosis for motor neurone disease 18 months previously. We look back and think it probably started some years previously when. as a bellringer, he moved from the heaviest to the lightest bell as he could not ring the heavier bells. Everyone's progression is very individual and a consultant advvised us that if the onset was slow then the development would be much the same. My husband has weakness on his left side particularly grip but he still plays golf, does all our cooking, irons our clothes, we regularly go on walks and generally do what we like. If you want to travel we found we could still get travel insurance with a supplementary (not huge) premium. Any problems we tackle together. Current thinking is that it is important to exercise the muscles which are not affected to keep them as healthy as possible, a change in advice particularly after a study carried out by Swedish medical personnel. You can find exercises on the Myositis uk and Us Myositis websites, let me know if you can't find them and I will send you a link. iI you look online you will see that many cases in the over 50s go undiagnosed as people think it is weakness as a result of aging. Quote :

How is inclusion body myositis diagnosed? As you get older, you may experience many health issues. Muscle weakness is often expected with age and is easy to dismiss. Because myositis is rare, many cases of IBM go undiagnosed or misdiagnosed for years after the first symptoms appear.

So there are probably quite a lot of people who don't know they have IBM and miss the chance to take steps which may help. At least with a diagnosis, we are given the chance to keep as healthy as possible, eat well and exercise. No known cure at the moment but research still goes on as does life. Our local consultant gave very little advice and we asked for the referral to Kings Hospital in London who then referred us to the Neurology Hospital, also in London, who are brilliant. I don't know where you live or what advice you have been given but a specialist hospital is always a good way to go. After the mis diagnosis of motor neurone we can deal with this alternative.

[TiredSoul10 in reply to Tolkein]

Thank you so much. I'm in my 30s. Rapid onset and progression, started after the covid vaccines. Using walking aids. I'm significantly weaker than colleagues who are 30 to 40 years older. I think it's gonna be a quick progression for me.

[Tolkein]

I’m sorry to hear that. It can be difficult to keep positive but we try to make the best of each day. Keep doing what you can do and definitely try to exercise those healthy muscles. If you can be referred to a specialist hospital please know you are entitled do so, they have far greater knowledge about this condition than local medics, some of whom have never even heard of ibm. There is also a pathway of treatment and help you should receive e.g. physio, I’ll try and locate it.

[Tolkein]

Here is the link to standards of care I mentioned, hope it works :

bmcrheumatol.biomedcentral....

Also to mention that if you go to a specialist hospital you can often agree to participate in research. My husband does this and it’s a positive thing to do because the more information researchers have, the greater the chance they may develop treatment. If you let me know your nearest town, I’ll do some research about your nearest specialist hospital.

[TiredSoul10 in reply to Tolkein]

Thank you so much. I'll print this out so I can ask my GP what we could do.

[drummer-boy]

Hi, I was diagnosed 2 years ago and I now need a wheelchair to go long distances. I can move around with crutches but not for long.

I think the degradation times vary from person to person.

I also get lots of muscle pain and aching along with tiredness.

I hope things work out well for you.

and you are not suffering too much.

[TiredSoul10 in reply to drummer-boy]

At first the doctor thought it was fibromyalgia. Could the pain be fibromyalgia? I have gastrointestinal problems and vertigo too.