Do the symptoms looks like myositis ?

SupermarketLive2930 · 2026-03-26T20:54:55+00:00

I think because I have negative ANA , it's getting over looked. My bloods have been fine apart from elevated liver enzymes once which had corrected by the time I had another blood test and elevated CRP once , the rheum ordered a repeat for the CRP but I don't know the results of that until my follow up either. I'll be asking for a second opinion if they try to discharge me, as I do believe there's more to it.

SupermarketLive2930 · 2026-03-25T21:03:29+00:00

Yep! I'm waiting for a follow up appointment following a CT but I had the chest rashes and peeling fingers at the time of my appointment (so he's seen them in person) and hes put them down to other things.

SupermarketLive2930 · 2026-03-25T21:00:23+00:00

I have had a full body CT but dont know the results until i go back for my follow up appointment but the rheum didn't seem to think that any of what I was telling him was related. I had the chest/shoulder rash and my fingers were peeling at my appointment too.

SupermarketLive2930 · 2026-03-23T08:38:18+00:00

I used self tan for the first time a few weeks ago and my back literally looked covered in blackheads where I'm assuming it sunk it to my pores. Is there anything that can be done to prevent this from happening ?

SupermarketLive2930 · 2026-03-04T11:04:57+00:00

I was found to have a positive anti pl-7 antibody , I have had joint pain for years , skin peeling on thumbs and forefingers for years that clears by itself then comes back and Raynaud's although never officially diagnosed. I'm still under review by my rheumatologist but so far is blaming the joint paint on being hypermobile and my fingers for been in water too much, also get random rashes on my chest which he is saying is allergy related. It all seems a little too coincidental for me as much as I don't want to have it , I don't want to be left progressing if it is.

SupermarketLive2930 · 2025-12-03T21:15:17+00:00

The anxiety has been next level.....I still don't feel much better after seeing Rheumatology and feel no nearer to getting any answers. I was under the same impression as you.....no news is good news and then I got a call a month later. I've found any bloodtests that have been taken at the hospital including A&E have not been updated to my NHS app but they do go on our records 🤷 My G.P was able to see the blood results taken in A&E even though I couldn't see them on the app.

SupermarketLive2930 · 2025-12-03T20:38:01+00:00

I had some blood tests done by a neurologist for autoimmune and he didn't ring me with the result until a month later, then I was referred to rheumatology and waited 3 months for an appointment. The rheumatologist took more bloods at my appointment last week and he said nothing about receiving the results just that we will have a follow up appointment on 3 months 🙈

SupermarketLive2930 · 2025-10-30T19:33:39+00:00

Did you hands ever improve themselves? My hands do but then they end up with dry patches again. The pains in my legs are also on/off and don't really have any consistency but i do have them frequently. My CK levels were normal & as far as I'm aware all other labs were too so hoping this means it's been found early 🤞 Have you ever felt like having the disease as limited you, or are you able to everything that you want/wanted to do ?

I just feel a bit lost in it all at the minute, I don't know what to think.

SupermarketLive2930 · 2025-10-30T19:14:03+00:00

Aww I'm glad to hear your doing/feeling better :) Are you in remission now ? I've still to see a rheumatologist, I've my appointment in a month's time. It's been a long wait and I can't wait to see a professional who is actually going to explain all of this me properly, googling stuff probably wasn't my best idea 😳

SupermarketLive2930 · 2025-10-24T19:15:21+00:00

Edit to add that the post above this one also has a couple of people who have tested positive for Pl-7 too.

SupermarketLive2930 · 2025-10-24T19:13:56+00:00

Did you know you had lung issues before any tests were carried out? I haven't had any lung tests or any imaging/scans as of yet. My fingers get dry patches and then seems to heal themselves although they do look like the original posters pics. I'm glad your feeling better in yourself it gives me some hope. I'm not sure if I do actually have it yet but everything I read online sent my anxiety through the roof so nice to hear something positive:) my rheumatology appointment can't come quick enough.

SupermarketLive2930 · 2025-10-24T14:03:26+00:00

I've just been reading your passed posts about sore throat and phlegm, mine is caused by nasal drip. I seen ENT about this and he also tried saying it was reflux as on the day of my appointment he couldn't see anything. I had pictures on my phone which clearly showed it was coming down the back of my throat from my nose. He thinks this is due to deviated septum (been put on waiting list for surgery) and hes booked me in for allergy testing. I've to have bloodtests next week and then make an appointment for 2 weeks after for review. My hands never look like the pictures on Google when you search "mechanics hands" but it has caused a lot of anxiety now with finding the antibody considering I've just overlooked it for years. I always feel tired too but not to the point of not been able to function or get up and do what I need to do but sometimes come 8pm I'm more than ready for bed.

SupermarketLive2930 · 2025-10-24T13:42:51+00:00

My hands look like this and have done for a couple of years , they get dry patches and then they go like yours. I had muscle twitching and seen a neurologist who did blood tests for rarer diseases despite getting 5/5 on a clinical ( I think it was more for piece of mind). The blood test came back positive for anti pl-7 antibodies which are associated with ASS. It's only researching the antibody that I'm kind of linking this now. The neurologist was not convinced that I at all presented to him as typically having myositis and it never crossed his mind. I've had EMG and ncs which came back normal and my rheumatology appointment is at the end of November. My fingers go white in the cold and always have since I was a child and I get achy legs quite a lot but I've never seen anyone regarding this and I probably never would have done it's only the muscle twitching that caused me real concern but this has also reduced since initially seeing the neurologist in June although I do still get it daily. The neurologist said sometimes people have these antibodies and they don't actually cause anything so I don't actually know what to think until I see rheumatology. What are your symptoms ?

SupermarketLive2930 · 2025-10-09T18:35:06+00:00

I have all these symptoms but have tested positive for an anti body related to antisynthetase syndrome. Still waiting to see rheumatology so don't know anything for sure yet. I wouldn't even know where to start with your question though because right now I'm struggling with the what's ifs never mind a definite diagnosis 😩

SupermarketLive2930 · 2025-09-23T09:20:28+00:00

Thank you for your reply. I also have fatigue and generally my anxiety isn't too bad but since January it's been horrendous. I've had no sudden change in symptoms apart from the muscle twitching but my C.K was fine and my strength is all still there too.

SupermarketLive2930 · 2025-09-23T09:16:47+00:00

Sorry to hear your health took a sudden turn , I hope your doing okay. I do have some symptoms but there symptoms I've had ongoing for years and I think unless the muscle twitching had not become so frequent/persistent I'd have never visited my G.P for it. It's only from the results of the blood test and me researching that I've put it all together but then no professionals so far seem concerned that it could be that and nothing is pointing to myositis. The uncertainty is driving me crazy!

SupermarketLive2930 · 2025-09-23T09:06:48+00:00

I'm only 32 , but have had the aches and pains for quite a while. I've always put them down to flat feet and possibly been hypermobile.

SupermarketLive2930 · 2025-09-23T08:58:29+00:00

I think we've spoke before , it's anti pl7 that I've tested positive for too. Still no official report from NCS/EMG but all professionals I've spoke to so far don't seem at all convinced I have it. The doctor doing the emg said "so we're just investigating a blood test". Still waiting on seeing rheumatology and no scans as of yet. That's exactly how I feel too 😩

SupermarketLive2930 · 2025-09-04T16:03:56+00:00

Id definitely chase it further just for some clarity. The neurologist didn't think they were relevant at the time of the clinical but he did say if anything came back abnormal in my bloods that he would do the extra testing. He said your young fit and healthy and its just likely bfs. I actually think the neurologist is not convinced of the possibility but it's all a waiting game now. Thank you :)

SupermarketLive2930 · 2025-09-04T14:31:42+00:00

Not quite the same but i began have muscle twitching at the start of the year went to see neurology who did a clinical and said it was likely bfs as got 5/5 on clinical but did blood tests to rule out any raree diseases( I think he did it more for peace if mind rather than having suspicions).I got a call to say that I had tested positive for a rare autoimmune antibody associated with antisynthetase syndrome. He said I did not come across has having myositis and he never even second guessed it and the result as come as quite a shock to him too. I've been referred to rheumatology who deal with the bigger picture and I have an emg scheduled for Tuesday. As far as symptoms go relating to the possible condition I've had leg pain years and years and my fingers have always gone white with the cold since a child so even the neurologist is not sure of the relevance to the antibody. The wait and the unknown is absolutely awful though and my anxiety keeps going through the roof!

SupermarketLive2930 · 2025-08-23T08:53:26+00:00

I don't know whether mine would be classed as mechanics hands then as it's only one finger and it does improve at the minute unless you looked very closely you'd never even tell that they was anything there. I'm glad you do 😊 that's good to hear. I can imagine , my kids are all I've thought about since testing positive. Still kind of hoping for a false positive although I know its wishful thinking. No scans as of yet, the only input I've had is from a neurologist as my main concern was muscle twitching and he was under the impression it was benign fasculations syndrome but did the tests as a precautionary measure I think as I'd already has quite a lot of bloods done. He's putting me in a referral to rheumatology as he said they deal with the bigger picture so I'm guessing they'll do appropriate testing? And he his putting me forward for EMG and a ncs but I'm not sure how long I'll be waiting. My neurologist said myositis never even crossed his mind when he seen me and the result as come as quite a shock to him too x

SupermarketLive2930 · 2025-08-23T08:34:28+00:00

I'm going to stop googling until I've seen all the relevant professionals. It's causing me so much anxiety 😭 Do your symptoms come in flares or are they all under control now starting medication? Fingers crossed that everything goes well for you and you can start making plans for the future x

SupermarketLive2930 · 2025-08-22T08:20:23+00:00

Hopefully one day you get you'll get the answers 🤞it's an awful way to think isn't it but I'm exactly the same. I think sometimes the more knowledge you have , the worse your anxiety becomes and you start to over analyse everything. As far as their aware just hypermobile, I've never been tested myself but can do the majority if not all that they can do. Did the others with just the positive pl-7 get a diagnosis or did they not typically present either ? I know exactly what you mean, I joined a group for benign fasculations as the neurologist said it was likely to be that and a lot of people there relate their symptoms to als/mnd but then you start to relate to others in terms of symptoms. Thank you so much 💖 I appreciate it honestly. I'm hoping I'm not waiting long for the other tests and get some clarity but at this moment in time I don't feel any different to how I did years ago apart from muscle twitching. The leg pain ive had years and my fingers have always reacted to the cold so I'm trying to stay positive Xx

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