Necrotising myopathy/myositis

[Maureenhall55]

I have been diagnosed with NM/Myositis and have over the course of a couple of months become totally dependent 24/7 and am in a wheelchair. I start IVIG treatment on 19/06. Can anyone offer advice on this illness/treatment? I am finding it difficult to cope emotionally as well as physically now.

[lharris]

I'm sorry, I don't know anything about NM/Myositis nor IVG treatment, however I noticed that no-one had replied (probably due to this fact) and just wanted to offer my support, perhaps for the emotional element. Maybe you can tell me about the illness and the treatment...

[Maureenhall55 in reply to lharris]

The disease affects the muscles in the upper legs and upper arms wearning and destroying. It is an auto immune problem. 4 months ago I was completely independent, now I can hardly do anything for myself. If I can get onto my feet I can shuffle a few yards with a frame indoors but can't get in or out of bed or sit up without help. I am on a high dose of steroids so I don't know if the "emotion" is down to the medication or the progress of the disease but it is getting to me. My husband is caring for me and I have been promised Soc Services for half hour a day for personal hygiene but it doesn't take away the feeling of uselessness.

[lharris in reply to Maureenhall55]

That is a very quick deterioration which must be hard to get your head around. Have you spoken to your GP about the other effects of the medication? It may be worth seeing if you can have some counselling to help deal with the emotional element - it is a big life change for you and your husband and talking through it may help with acceptance and moving forward.

I'm glad social services are able to help a little. In terms of feeling useless I think talking therapies may be a good option. Your GP may be able to refer you too. Hopefully you will get to a point where you wont be comparing your current situation to the past but taking each day as it comes and taking pleasure in the daily achievements.

Either way, know that there are people on here willing to lend an ear and offer any support they can.

[Maureenhall55]

Thanks had a better day today than yesterday and will speak to doc. Other than that will try to count anything I can do as a small victory.