Hi! I haven’t been diagnosed as really long waiting list to see someone. But have similar symptoms to Polymyositis. I have pain and muscle weakness in my legs (mainly thighs), my upper arms and my neck. I got to see a Neurologist but wouldn’t let me explain my symptoms just went off my medical record (problem is that my record isn’t updated as my gp just keep telling me if I’m not numb then wait for consultant, which means any symptoms after the initial app. hasn’t been recorded). He told me he’ll test me for MS but he doesn’t think it’s that but wouldn’t test for anything else. (My MRI came back fine just waiting on reset of a VEP test) My question is would it be better to go private and if so who should I see a rheumatologist or neurologist? (Also has anyone had symptoms when going upstairs, halfway up and your leg won’t push any further? I don’t mean tired or burning sensation but like a switch as if your brain has decided the legs are no longer a part of it. My arms do the same when pushing and now starts to shake violently if holding something slightly heavy, Even a cup of tea!)
I’m really sorry for the long post!
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For context I suffer from anti-SRP immune induced necrotizing myositis,
First I'd insist on a fully myositis panel blood test. You neurologist should run an EMG as well (will determine if muscle or nerve related issue). After that it is usually an MRi and muscle biopsy. Be aware that the actual type of MRi is important (STIR is what is needed to see inflammation and muscle 'waste').
Not certain where you are in the UK but here in Lincoln I had to push hard to get to see a rheumatologist (who treat myositis herein UK, but don't expect them too know too much about myositis) - being newly back in the UK with 2 opinions from a neurologist and myositis specialist in the states (1 from National Institutes of Health in Washington DC). My GP had no clue, which she admitted and referred directly my after her first consultation. I was told, even though urgent, it would be 12-18 months to see anyone. This was not acceptable to me so I contacted the local hospitals PAL team who managed to get me an appointment within a month. I now await their blood work results (which now have been done 4 times, 1 by my neurologist in US, twice by NIH, one of which was in house and one commercial and this last one by the NHS). Seems the 2 diagnosis from US where not good enough for NHS for treatment to continue (under treatment for this condition in US)
Hi. Sorry to hear about your symptoms. I was diagnosed with Polymiositis. It did take a little while. I must admit, by the time of diagnosis, I was in a pretty bad state. Yes, I recognise the stair issue. I describe it as if someone suddenly pulls a brake on🙁
I couldn't lift my arms high enough to do my hair/put a hat on.
The crux was major swallowing issues. I lost 3 stone in weight (sadly it went back on in the end!).
It's as if every muscle just packs up.
It was a lovely Rheumatologist who diagnosed me.
The 1st test was a blood test for enzymes that show inflammation -can't remember but think that was GP..may be worth asking?
I had electric reaction type tests-can't remember the name! (Showed abnormalities).
I had a thigh biopsy(no conclusive result).
My MRI diagnosed it, if I remember correctly.
I hope that you have none of the things mentioned...🤕
If it is PM, the large dose of steroids made a huge difference, but sadly you do have to get off them...& I get v sore muscles and tire v quickly still.
I'm on Methotrexate, too.
If you can be checked privately, then it would put your mind at rest, at least in my opinion! Good luck and get well soon! ☺
Thanks! The description on the stairs is spot on! If I can’t get an appointment soonish I’ll try private (although with all the tests and scans the cost is going to add up)
Just wanted to let you know, I had to go private to get taken seriously aswell.
What alot of private doctors will do is give you an initial consultation and If you self fund, they will write a clinical note to your doctor to request to the relevent tests on NHS at no cost to you.
I really feel for you, as I went through a similar thing with GPs not really taking me seriously and not seeing me face to face. As soon as I paid for a private consultation the doctor saw me and immediately referred me to rhematology where I had a week long stay at the hospital!
Thanks for the reply! I bit the bullet and paid for a consultation with a rheumatologist. I’m glad I did. He was annoyed I hadn’t been seen urgently. Also he wasn’t happy with the neurologist I saw as he realised that the consultant had hardly done any of the tests he should of done.
He says I have proximal myopathy and spasticity in my legs. He’s not sure if it’s caused by myositis or cervical myelopathy. He’s written to the rheumatologist I was referred to, to hurry it up. Sent a letter to my gp to start blood tests, MRI etc.
I went to gp, she can only do some of the tests as they are quite specialised. She said whoever orders the tests then has to treat whatever comes up. Which I think is a bit odd, surely they can do it to hurry up the process. She’s sent for referral for MRI that the private consultant has suggested (all my spine again and my quadriceps) but again it could get bounced back and have to wait for rheumatology. My blood tests are tomorrow so I hope I get answers soon.
If the neurologist didn't listen to your symptoms he failed in a basic aspect of the job. Complain to the hospital, tell your GP straightaway. With symptoms like yours you should be seen more quickly. You need a blood test for creating kinase level. If this is raised, it should be less than 200, you ought to be properly investigated and tested. I was first diagnosed in 2015. I had the blood test in January, it gave a ck of 6000+ in February I had a muscle biopsy that clearly showed necrotising immune mediated myositis. I am in Scotland and things work differently here.
It is important because if you have this sort of myositis or certain other sorts, you can get treatment to ease the symptoms and slow deterioration.
You could have myositis, but other conditions have similar symptoms. Do you take a statin? If so stop it and see what happens, sometimes they cause these symptoms and for some people they resolve in the absence of the statin. Some of us are unlucky and despite stopping the statin the symptoms get worse because the statin has triggered an autoimmune response.
On a practical note when lifting a cup of trying to raise your arms rest your elbow on a hard surface like a table. It often gives support to continue and may well stop the shakiness.
Thank you for the reply. I complained to my gp who said that he is well known to be abrupt and only wants to know what symptoms he’s looking for and ignoring anything else. Which is stupid. He discharged me there and then even before I had the tests! He said he would do a nerve conduction test (I think that’s what it was called) as well as the MRI’s and VEP but he never referred me for the nerve test. So the gp and I discussed going down the rheumatology route and if that doesn’t bring results to complain. But then I had started having the shaking with my arms and with my legs so they re-referred me to neurology and ask for a second opinion. The waiting is so long that I thought if I could afford to go private and see a consultant it might be better. Wasn’t sure which consultant to go with but also could I afford all the tests that are going to be needed.
It is not good enough for them to know a consultant is abrupt when he is not doing his job properly. This is negligence, by him and by everyone who knows about it and does nothing. This means you are left with significant and life changing symptoms with no investigations happening. The GP a should refer you to rheumatology. If you have myositis this is where you will get treatment.
I would also be inclined to contact my MP and MSPs about this. They may not be able to resolve it for you but we must keep telling what is happening so at the very least they can't claim that they didn't know how bad they have caused the NHS to become.
iv immunoglobulin every month. Been having this since April 2020. It keeps the myositis inactive so slows further deterioration right down. Others benefit from steroid treatment, this wasn't right for me.
Did this treatment just slow down the condition or has the muscle damage reversed. Also what sort of specialist did you see you pushed for this treatment? It seems really hard to get any physician to go down this road.
this treatment was prescribed by rheumatologist. It slows the muscle damage and puts the myositis into a less active state. I suspect from your use of language that we may not be in the same part of the world. I am in Scotland and despite the worst efforts of the U.K. government we still have the NHS. I cannot imagine how you deal with a long term degenerative condition like myositis without a reliable universal healthcare system.
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