Im 34 and I have been living with chronic pain for the past 11 years. It is only now that i have an amazing consultant. He has just called me to advise that they beieve i have myositis but would like to perform other tests which iclude
Muscle biopsy,Ct of my chest,Another MRI, and More bloods.
Is anyone else going through this at the moment so i know what to expect, where do they take the biopsy from, why do they do a ct of the chest? As you can imagine i am very scared but so releived to be a little further in my diagnoses as its been a long time coming.
Any help or advice would be greatly appreciated
Kind regards
Jay
Written by
jay-1987
To view profiles and participate in discussions please or .
Hi there, Your symptoms are very similar to my experiences when I was finally diagnosed with Polymyositis. The reason why your medical treatment team has decided to carry out those various tests is to fully investigate your situation.
There are different types of Myositis. A correct diagnosis of which particular type is rather important.
The scan will definitely inform doctors about the condition of your muscles. This is exactly where the cells giving your all your problems can be clearly seen. They will be inflamed because Myositis is an autoimmune disease.
After the scan, doctors will then continue with further investigations by doing a muscle biopsy. This will involve a microscopic section of the affected area of your muscle tissue being extracted with a needle. Usually the upper thigh is used for biopsy.
A full laboratory analysis will provide details of the condition of the muscle cells. This is important for further treatment of your particular type of Myositis.
Once all this happens you’ll be administered a choice of medications to help remove pain and start reducing the inflammations you’re suffering now. Usually prednisolone which is a steroid.
The entire process will take a few months but it will work out well eventually.
I know what I’m saying because all this has happened to me. Finally don’t be afraid of the proceedings and also don’t be afraid of reporting your concerns to your medical team during the whole time you are receiving treatment.
Thank you so much for your reply, I am really scared as they have also mentioned they wish to do a Ct of my chest to rule out an underlying cancer. I have been going through this for 11 years and im just so releived that i am a bit further forward. Thank yuo for sharing your experience with me, Can i ask what the long term prognosis is. I said to my consultant that i am getting worse, I take a double base morhpine as i am in so much pain daily, I also take meloxicam which is helping ever so slightly.
Can i ask, Do you feel terrible in the morning when you wake up and does it take you a while to get going? I really struggle in the mornings.. Also, do you find that if you get a cold you feel extremely unwell? Sorry for all the questions, its just nice to know im not on my own
Hi there, The scan of your chest is a standard procedure to check for cancer cells. I understand it’s a bit of a concern for you, but it’s what happens when you report long term pain. Doctors do this nowadays to rule out that as a problem before going any further with other treatments.
Eleven years is a very long time to have coped with pain for so long without any effective treatment plan being put into action for you. I’m quite surprised about that.
You should have been given a prognosis already by your doctors if you are being treated for Myositis. Be sure that you know what type of myosotis you have. There are three types. Each one has a very different treatment plan.
I’ve been diagnosed with Polymyositis. That happened to me eighteen months ago.
I’ve had treatment that ranges from michrophenolate tablets, to various types of steroid tablets and different types of infusions. You’re likely to begin any one of these treatments fairly soon. That depends on the results the scan supplies to your doctors.
To answer your question, I do not struggle with pain in the morning and no, I don’t struggle with getting started in the morning either. Not currently anyway.
However, I did have BIG problems one year ago, before the treatment plan I’ve just mentioned began.
These Myositis treatments generally take around a year to make positive impact on your health improvements.
I realise a year sounds rather overwhelming. It is a bit but that’s the truth of the situation.
I’d highly recommend you google the many websites and YouTube films available that discuss diet changes for people who have Myositis. There’s loads to watch! I’ve changed my diet quite considerably and it’s helping me a great deal.
Finally I don’t really get colds because I’m full up and fortified with healthy fruits and vegetables...from my healthy diet plans!
This is really re-assuring - Thank you. Yes it has gone on for such a long time. I have been pushed from pillar to post - Firstly i was told i have "chronic pain" then it changed to Fibromaylgia. It was only that i started to feel lot worse that my GP finally refered me to rhuemotolgy. It was onyly when the consultant looked at my latest MRI he found i have significant changes to my sacroilic joint so he ordered me to have specialist bloods which has shown i have tested positive for the Anti SAE antibody. I only found this out yesterday that Myositis is what they are now looking at but that the other tests will confirm it.
I have to say, i am really annoyed that it has taken so long, My pain is so bad that i have to take a double base morphone painkiller now. The consultant has advised that i will only be on this until we have a clear diagnoses and then they will have a treatment plan. So as you can imagine we have not got as far as the long term prognosis as yet as i am still undergoing some tests.
I am pleased to hear that you are managing so well, I will definately have a look into the healthy eating side of things, although i am quite healthy anyway, its a good starting point though. Grateful for any advice, hints and tips
I was diagnosed with dermatamyositis in October last year.
The problem we have is, you can only speak to a GP about one symptoms at one appointment. And they know very little about myositis and the different types.
You could well get phone calls for hospital appointments, you knew nothing about. As Garry told you, about all the tests, there are also physio appointments, gynecology appointments, rheumatology , dermatology etc.
They do exhaust you with them at times. But you will still be very grateful.
People say how well you look , or how strong you sound.
As you have suffered for so long you will know this already. You want to say ' no I am not ' but how often do we not have the strength to even do that.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New looking for advice pls 
Hello! Advice on who to see
How do you get a firm Mysiotis diagnosis? What scans will show affects on muscles? 
Hello to every sufferer fighting his/her way back to a kind of normality
