I have just been diagnosed with Myositis, but not had a muscle biopsy to confirm the type. How long did it take you to get a muscle biopsy?

[Campergirl76]

I have had a muscle condition in my lower legs and now my arms with difficulty swallowing which has degenerated over the last 3 months. I had 3 weeks in hospital under observation and was discharged with no diagnosis except “possible polymyositis”, no prognosis and no treatment. I still have not seen a neuro physio although it has been almost 4 weeks since discharge. Is this a usual time span before getting treatment?

[Galaxies1]

It can take months for some. And there are specific tests that need to be done to check for markers. You can start by asking for full bloods and muscle testing and an MRI. You may need to go private/ pay to speed things up. And find yourself a good rheumatologist.

[Campergirl76 in reply to Galaxies1]

Thank you for your info: it all helps!😊Because my Health Authority was not able to give me a diagnosis in a timely fashion, I have gone private. I had a zoom meeting with a consultant Neurologist within days and he arranged a battery of tests in London the following w/e. It is he who has given me the diagnosis of Myositis, but still waiting for a muscle biopsy for confirmation of type. I can then start treatment. Seeing the neuro physio for the first time tomorrow and I realise how important that is to stop my muscles deteriorating further. 😊

[Galaxies1 in reply to Campergirl76]

That's great. Well done. I'm actually looking for a neurologist so if you feel this one is proving good and caring and you don't mind I'd love to have a contact.

Good luck with the physio too. So important like you say

🤞🤞🤞

[Foxy619 in reply to Galaxies1]

Hi

I just noticed your comment from 2 months ago-I was tod in 2024 about May that I had the RO52 positive for Myositis think it may be Polymyositis but it's been such a drawn out few years - one Nurologist fantastic found the antibody put me on to another Nurologist at QE who didn't actually get to see ne untill Nov 1st 2024 and told he'd fet me back Dec 24 fir a biopsy it's the 28th today and still nothing.

In the meantime iv realised I have Dermatomyositis not poly as I do get a v rash just didn't realise that's what it was now I have a dry cough for 5 weeks :no pain or wheezing just don't know what to do doctor said call back if it gets painfully??

I can't afford to go private don't know what to do and I'm feeling awfull and depressed

Regards

Carolyn

[Galaxies1 in reply to Foxy619]

Hi I left this group as I got slammed by a member and felt very badgered for no good reason.

I'm sorry you're going through this. DM is very rare. Most Drs and systems don't get it. It's all really individual and it can go into remission or then become another form. That's what I've found. Treating is trial and error. And because it's so rare you can become prime fodder for endless trials. Which is personal choice. Holistically diet and exercise are really crucial. But not any old exercise or diet regimes. The one that suits you. Other things like massage or cranio work can help. Meditation. But again it's all individual. I've got a very aggressive type and nothing really helps and it is depressing. All I can usefully say is I'm sorry and I understand. I hope you find relief. Even remission I re joined this group just to reply to you. But will most likely leave again due to what happened. You can PM if you wished. I send much good wishes and luck 🤞🤞🌷

[Catpuss66]

if you go to the Facebook myositis page under files there is a list of all the specalist myositis consultants around the country, or ask Jo Goode the best way to get quick referral.

[Campergirl76 in reply to Catpuss66]

Thanks for the info. 😊

[Rock_Cottage]

I'm a 73 year-old man who has suffered a gradual loss of muscle strength over five years or so. Doctors didn't take me seriously during Covid time, but once I was referred to a consultant a year or two later, the diagnosis came quite quickly. I had a nerve conduction study, an EMG and a muscle biopsy all within a month in September 2023. The biopsy confirmed inclusion body myositis (IBM), for which there is currently no treatment, so it's a matter of managing your mobility to cope with a gradual decline.

Let's hope you have one of the varieties for which treatment is available. Exercise helps to slow it down but not to recover muscle strength.

[Campergirl76 in reply to Rock_Cottage]

Thank you for your info. I am sorry to read of your diagnosis and prognosis. I am having my first neuro physio visit tomorrow and I realise how important my that will be for me. 😊

[paintermanic]

I can see other replies to you which are good. You must get things moving as you dont want to deteriorate further. I take methotrexate which helps. I had physio at home and then at the hospital over several weeks. I wouldnt be walking now if that hadnt happened. Everyone is different. All the best.

[Campergirl76 in reply to paintermanic]

Many thanks: I had successful first meeting with the neuro physio this AM which has encouraged me to continue with my exercise regime. Just pushing to get the muscle biopsy and then I can get treatment.😊

[Campergirl76 in reply to Campergirl76]

I have now managed to get Conductivity and EMG tests and muscle scan and biopsy in my left thigh under local anesthetic: it was the higher end of uncomfortable. But at least now I have a diagnosis and prednisonal 20mg which I have been on for 2 weeks. Not seen effect yet, but early days. I have now got some particularied exercises from our neuro physio therapist 🏋️‍♂️ and an appointment with rheumatology. Also hoping to get some hydro therapy, so hopefully with the rapid response I had from from London privately, I can concentrate on my changed life-style with a hope of improvement.😊

[Foxy619]

HiyaIv been ill since 2019 and told i had polynyalga and put on steroids after a a big flare up of illness a neurologist confirmed in May 24 that I have Myositis and cervical stenosis only just yesterday seen another neurologist that said he thinks it's polymyositis but will have biopsy to comfirm and a further EMG(he apologised for the delay.

Im 64 and been working g up untill 2 months ago when problems with my legs now walking with stick as I'm writing this I'm just about to reach for a painkiller very miserable at the moment.

If you haven't already make a appointment and express that you need to see the neurologist

[Campergirl76 in reply to Foxy619]

Sorry that you are miserable at the moment and in pain. it’s a bit of a blow isn’t it? After deteriorating for 3 months, I have at last got a diagnosis of Polymyositis and started on steroids, but after 2 weeks not yet seen improvement so I will just have to be patient…

[Foxy619]

Hi CampervanSorry I didn't realise you replied to me,

Life's been mad iv now stopped working because of my health so have a bit of time now,

Iv been told Myositis Nurologist thinks it's polymyositis having a biopsy this month-waitibg for a phone call.

I was on steroids for 3. 5 years couldn't get of them this Nurologist said he's thinking about me going on a 3 day steroids by intravenous might be worth asking if it might be worth you trying if the tablets don't work.

You should really see a difference with Predisone in a few days-have you had a biopsy - iv been waiting since April 24 the secretary of Nurologist was off and everybody's appointments were delayed.

So now it's not just Cervical stenosis but Myositis as well so now I'm not sure which pain is caused by what.

You got to keep smiling Xmas is around the corner and my granddaughters want everything thank god for online shopping the high St is out of the question

Keep safe take care

Carolyn

[Campergirl76]

I have now had a muscle scan and the results of my muscle biopsy done in November after 3 months pushing unsuccessfully my local Public Health. Went privately and within days I had consultants on the go and tests booked. I have confirmed Necrositing Myopathy and steroids have been started 6 weeks ago with increased diabetic medication to stop my glucose swings.

No improvement on my lack of strength yet but my ck levels are dropping in the right direction, but not down to low levels. My Professor is doing a telecom review at beginning of Jan when I hope to see less killing of my muscle cells, Hydro therapy has been a huge help but again, had to go privately. I have now been offered an appointment 3 1/2 months after my local hospital discharge, yet hydro therapy is what is so important in my treatment. I now have 24/7 care as I cannot risk a 5th A&E in 11 months with stitches again.

When I eventually saw my Public Health Neurologist (5 weeks after Public discharge) and rheumatologist ( 2 1/2 months after Public discharge) all they knew about me was my name. Neither of them had been told of the comprehensive tests and diagnosis I had privately in London. A complete waste of both Public Health Consultants and my time. Each public health department and my GP live in silos not communicating with me or each other, just batting me down the road and ticking the box! It almost 3 weeks for my increased diabetes prescription to get to me- all said they had done their bit , but the fax claimed sent was not received by the pharmacist …. despite our bothering all and sundry!

Fortunately no pain, and can toddle with trolley. So sorry if you have not got your diagnosis and treatment yet. I am digging a considerable hole in my savings and pension, but I needed a diagnosis and treatment NOW and I can’t take it with me.

🤞for us all to improve in 2025!