I have a rheumatologist's referral, which will likely take 6 months. When it was made, it was suspected I had psoriatic arthritis. Since then I feel it is much more likely I have Dermatomyositis. I have a new doctor (my old one referred me) and I wondered if they might be able to do some tests now to speed up a potential diagnosis. Does anyone know if GP's can do any tests to help? If they can, what should I ask for?
Also, would it be a good idea to get my GP to write to the rheumatology dept. and revise what my suspected condition might be? I hate the thought of waiting six months, seeing a rheumatologist who is not really familiar with Dermatomyositis, and thus wasting the time I have with them. I thought maybe if they knew in advance that I might have it, it might speed things up?
Any advice most gratefully received.
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Chancery
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Good luck with your search for answers. I am on a similar path. My GP has been great and offered to refer me anywhere, however he just didn’t know where was the best place. A major teaching hospital is much better than a local district general as the rheumatologist will just not be experienced enough in Myositis. An immunologist was a useful start for me and his waiting list wasn’t as long. He ran a barrage of blood tests that moved the whole process on so that could be a starting point? I have an appointment at Myositis specialist centre next week and am really hoping to get closer to answers. I am taking my wealth of information and photos of everything that has been happening in the hope that this can help be those missing pieces of the jigsaw puzzle!
I am not sure there is anything a GP would routinely test for that would pick things up to be fair, however I am not an expert in that field.
Thanks, Echo, are you in the UK? If so, an immunologist does sound like a good idea. I might try running that past my GP, if I can pick up the enthusiasm to go in there! Also, I didn't know there were myositis specialist centres (again, assuming you are in the UK) - did your GP refer you there, or was that the immunologist?
Hi Chancery, yes, am in the UK (having my usually disturbed sleep hence replying at silly O’clock!! 🤦🏼♀️) the GP did the Immunology referral on the NHS. I only saw him a couple of times as I don’t have frequent infections, but he said he will still be part of the MDT at the main teaching hospital I am under currently. His input into which blood tests to do and the results from those have really helped move this forward more than anything so far 👍🏻.
There are around 5 centres in the UK that are Myositis specialist centres. I am in the East of England and my nearest is Kings in London which is where I am going. Because they are a Tertiary Centre, you are able to be referred by your GP to these centres. There is also a closed Myositis group on Facebook with information on where the centres are etc.
The rarity of Myositis and complexity of variants makes it hard for GPs and local or even Teaching hospitals to manage, hence getting to these centres to those with experience could make all the difference.
Thanks, Echo. I'm in Scotland, and I don't see one listed for there, but I'm sure I can suss that out in due course.
If you can spare the time, can I ask how your disease presented itself? What was the history of events that lead to you suspecting Myositis? (I'm assuming a doc didn't spot it?!)
Hi Chancery, there is a full list of centres and much more info on the Facebook page. Have just had a look and looks like nearest is Dr John McLaren Rheumatologist at The Victoria Hospital, Kirkcaldy, Fife. Apparently he sees about 50 patients with Myositis a year and has close links with Prof Chinoy at Manchester.
I have a whole barrage of weird and wacky symptoms that I really started to properly notice around 10 years ago and ended up in hospital very frequently for 6 months (most major being breathing issues, but I have said all along it felt muscular not airway and clinicians now agreeing with my thoughts after many tests) but also many issues of muscle tightness & pain etc. Eventually diagnosed Fibromyalgia but am now not convinced that was correct. I had a sudden remission of many symptoms for 9 years then last Dec suddenly major relapse and struggled with health issues for a year now - rashes, Raynauds, Sjogrens, voice impact, Trangenial neuralgia and significant worsening of breathing issues etc. Been under Immunology, Respiratory, Vasculitis clinic, Rheumatology, Physio .... and the list goes on! Lots of bloods and as with many people, a lot are in normal range there are some not normal and Also tested positive for Polymyositis-Scleroderma overlap but Vasculitis Consultant thinks may be Dermatomyositis in the mix. They are a bit stumped now as to how to move forward hence I am seeing Dr Gordon at Kings as he has a wealth of experience.
Hope that helps.
Everyone seems to present with a variety of symptoms and finding not only if it is a Myositis, but then which one, is a challenge and you need to have energy & strength to fight/co-ordinate for answers!
Wow, that's quite a coincidence, Echo, I also have trigeminal neuralgia (you put "trangenial", but that doesn't exist according to Google so I assumed it was a typo?) TN is also rare and I read that myositis can have neurological aspects so I admit it did make me wonder if the two were connected. I've had that since 2014, I think it was, when it started. I had it very severely for a year and a half but it is more manageable now.
Funnily enough, I also wondered early on if I had fibromyalgia but I kept trying to find a connection to the rashes, because I did feel it was all connected. I get very itchy skin over painful muscles (no rash though) which I feel is not a coincidence.
I've had high Ferritin for over a year, which indicates inflammation, but the first time it was discovered they didn't tell me and I only found out by accident. I feel that is related to the muscle pain too.
My most pressing issues, in order of importance (at least roughly!) are muscle pain, particularly in my upper back. It feels as if it can't hold me up. If I stand for any length of time it gets very painful very quickly. Ten or fifteen minutes of washing up will see me having to bend over, head down and rest on the sink edge. It particularly dislikes standing with raised arms (like washing up and sorting clothes on a bed etc). I also have tremendous difficulty climbing anything, which is fun as I live on a hill! I get very breathless and my lungs feel stiff, like they can't get enough oxygen in. Next is the rashes. I have them round my eyes permanently. During the summer I also had them on my collar bone and round the back of my neck. I've also had teeny spots on my nipple and my belly button. They can be (in hot weather/sun) very VERY itchy and the only thing that works on them is steroid cream. My eyes are permanently discoloured with them. If I don't use cream and they get irritated the whole eye goes red and itchy. It can clear up (ish) for weeks on end (right now, for example, I have 3 teeny spots on my nipple but nowhere else) but then it just flares up again. It never feels truly gone on my face, which prickles and itches all the time. But I always have some rash somewhere. Mine is just red-brown, slightly raised and can feel dry to the touch. If they get bad the skin flakes off. There's no real spots though, except for the tiny individual spots I have on my torso.
As also-rans, I have problems swallowing, a sore throat a lot of the time, and I always seem to be either choking on things or hurting my throat swallowing. I have to break magnesium tablets into 3 pieces to get them down. I have terribly itchy skin, particularly on my haunches, tops of my arms and back, which can be very severe in cold weather (I used to think I had a type of cold urticaria). I have IBS, so a lot of gut problems, and struggle badly with anxiety and depression, at least partly caused by feeling so tired and run down a lot of the time. I'm always making plans of things to do, or trying to, and I'm usually too damn tired to see them through.
I have tried several times to get 'fitter' by going for an hour's walk a day, for example, but I don't get fitter, I just get sorer and more tired. If I am short on sleep (I have a lot of sleep problems, including Restless Leg Syndrome) my breathing and muscle tiredness can be really severe. It seems to drastically reduce my ability to exercise. I also have longstanding tendonitis in one ankle and 'arthritic' toe pain in the other foot, so I'm a bit crippled there too!
And I'm going to stop there because that lot is enough to depress anyone. How about you - you have any of those problems?
I've picked up the courage a couple of times to go see about things like the breathlessness (I was concerned it was heart failure, told it wasn't and sent away!) and my rashes - that's how I got my rheumatologist's referral - but on the whole I've avoided doctors because I always feel dismissed and negated when I go. 62 years old and female is like wearing a badge saying "Please dismiss anything I say. I'm just hysterical."
You made me smile as the way you wrote things I so get it. Yes, you are correct with autocorrect deciding what I do and don’t have!! Yes, Trigeminal neuralgia. You are putting up with a lot.
YES of course your GP can help. A simple blood test can measure the level of your Inflammation indicators.( CK and another) The skin itself often starts with a simple red rash and often purple discolouration under the eyes. My definitive diagnosis was a Muscle Biopsy but I had lots of tests before that were all showing indications.
Please do not wait 6 months!
I was finally admitted to hospital when my diaphragm (breathing) and swallowing facility were on the verge of closing down but that is because I waited.
Had I listened to my body I would have gone back sooner.
I was having tests for lots go 'bits' of the body but my Rheumatologist hadn't seen me and seen the WHOLE situation. Once she did, everything kicked in and I was soon on the right path x
YOU have to be responsible for your own health! Push hard, ask questions and keep on because no one knows your body like you do!
Thank you for that, Rabbitygal - I found your reply really cheering, because I have had a feeling, literally, for years (I can remember saying to my then doc' I felt I had an autoimmune condition because I felt as if my body was attacking itself as far back as about 2011, and being looked at like I was a hypochondriac) and I've been frustrated endlessly with all the things that are wrong with me, and I have ignored most of them because they seemd too vague, and too many, to go to doctors with.
I'd say the biggest single problem I've had is the muscle pain and trying to convince myself, and then doctors, that it wasn't just age. I had to take steroid tablets for five days in 2018 (for a drug induced rash) and it was like a miracle cure; I literally felt reformed on them; I could walk, move, everything stopped aching, and I felt hugely improved morale-wise. I mentioned it to two doctors, that I felt my very positive reaction to them might indicate something was wrong but they both ignored me.
Since writing this post I've made an appointment to see a doc about it formally, instead of just waiting for my rheumatology referral, and to ask for a referral to the specialist in Fife. I also bit the bullet when I was in getting repeat bloods done and asked the nurse if I could have CK measured and he said yes, no problem. I nearly fell off my chair, so I'm hopeful that might show something that helps me/my doc get a referral.
Thanks again for your reply. You've helped me feel I'm doing the right thing in pushing for a diagnosis of this. At least if it's proven not to be myositis I might move forward a little, seeing rheumatologists.
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New looking for advice pls 
How do you get a firm Mysiotis diagnosis? What scans will show affects on muscles? 
Help with excess mucus in the throat 
