Newbie here.

[Eogz]

Hi, I'm Ian. Sorry for this long post. Just found out today after a 7+ yr journey of trying to figure out what is wrong with me that I have markers for Myositis ok my blood work. I started with very low key fatigue almost 10 years ago, with brain fog calling around 7 years ago (trip to the memory service and all was clear).

After that was diagnosed with Sleep Apnoea, which I'm treated for and hoped this would solve the issues. Nope I use my machine and there is less sleepiness but the fatigue got worse, slowly but surely.

Then I started to experience some mild balance issues with some coordination problems. Still not too bad but my grip got weaker with pain in my forearms.

Checked with a private Neurologist and it was suggested that it might be Carpal Tunnel or Spinal Stenosis. Nope it was neither.

About 3 years ago the gradual muscle fatigue and weakness started, it's not clinical, I can operate but have no stamina and reduced strength.

Got no where with Endocrinology, other than low testosterone, treated and no difference.

Most recently I've developed some Atrophy in my left calf (dominant leg) and fasciculations (tiny muscle twitches).

I walk like an old man, in fact often I'm passed by many silver haired folk.

So it looks like that today, I finally have the start of an answer and it appears I am showing markers for Myositis. As much as I don't want it, it does feel good to see something tangible that might be causing the above and it may also be treatable, possibly.

So my GP has asked Rheumatology for advice and guidance. What should I expect next in terms of getting a diagnosis? I'm East Lancashire.

I'm on the list for Neurology which may still be needed, for some of my symptoms which may not be typical.

Just thought I would say hello and see what you all have to say.

Cheers, Ian.

[whisperit]

Hello Eogz

Yes, diagnosis can take for ever! Once clinicians believe myositis is a serious possibility, a typical route is to do a full blood profile for markers (as you have found, there are a host of antibodies that can suggest different variants). You may then get a MRI, but the definitive test is usually a muscle biopsy. Some clinicians seem to favour a relatively modest "punch" biopsy, others a bigger sample. This is done with local anaesthetic but by a surgeon, with proper operating theatre protocols. The results should be pretty definitive, and treatment options will follow this. Two major variations would be PM (polymyositis) and IBM (Inclusion Body Myosistis) The first is an autoimmune inflammatory condition usually treated with steroids and immune suppressants; the latter is not. Both are typified by muscle weakness and fatigue.

If you haven't already, you might want to join The Myositis Community of Great Britain and Ireland on Facebook. It's a very active group - much more so than this - and has 3k members, so there's always someone who will help on there.

Hope that's useful x

[Eogz in reply to whisperit]

Thanks, I've applied to join the group. Many thanks for your reply.

[SoonToBe in reply to Eogz]

My understanding is that most physician now consider the blood test the 'definitive' test for inflammatory myositis (those caused by auto antibodies, and generally showing muscle inflammation) and that muscle biopsies are only really run when the blood test shows no markers (a rarer case where the blood test can be negative but myositis still present). The normal tests used are an EMG (check electrical signals for both nerves and muscles and minimally invasive), MRi (with contrast to visualize on a large scale the state of the muscles checking for wastage, edema and inflammation), blood test for myositis antibodies and (sometimes) a muscle biopsy. Please note there are other forms of myositis which show similar symptoms but have different causes (for example chemical, which can be caused by steroids, genetic forms, myofibrillar myositis is an example, this can look like the necrotizing form of inflammatory myositis). I know this as I am both positive for anti-SRP immune mediated necrotizing myositis (NAM) and myofibrillar myositis type 4 (MFM4, five genetic defect leading to this are known), both confirmed by the antibody test, MRi, EMG, biopsy and genetic testing (very, very rare combination as they are completely independent of each other and both are rare). My diagnosis was also confirmed by world experts in myositis. I was given a biopsy only because my symptoms are atypical - both proximal and distal muscles impacted (NAM proximal, MFM4 distal, slow moving (NAM is general fast moving, biopsy show signs of both).

[Eogz in reply to SoonToBe]

Thanks for your reply. Looking at Dermatomyositis it doesn't seem to cover all the symptoms and I do have distal atrophy of the left calf with fasciculations in both calves.

Also some balance and coordination issues (which may in fairness be due to the severity of the fatigue).

I'm hoping an EMG will come about as this will establish to some degree what is happening.

All of this only happened due to the atrophy and fasciculations starting (Jan this year).

So I'm grateful to be getting somewhere, it's been limbo land for the last 7+ years with no specific symptoms and my own self reporting which to a medic (GP) might as well be lies.

I'm not blaming anyone but there isn't much follow in on reports of fatigue and not obvious clinical weakness.

I'm a big strong fella, so it was always going to take time to show weakness.

Thanks again for the info, I'm very much at the start of this new chapter, but so much closer to answers, which is such a relief.

[Eogz in reply to SoonToBe]

Thanks again, that was really helpful.

[SoonToBe]

Is there any skin component? Dermatomyositis normally includes skin involvement (as well as muscle involvement). It would help if you knew exactly which antibodies were detected in the blood test. You can find out a lot of information on these links: understandingmyositis.org/ or myositis.org/ (these are US link but with the larger population much more information is available)

An EMG would be good but bare in mind it is not a definitive test - it can only tell if a nerve or muscle issue is present (it can suggest which form of muscle issues are present but).

[Eogz in reply to SoonToBe]

I had a positive on MI-2 Beta, during the ANA screening along with a whole host of other tests. Creatine Kinase was normal. Some slight elevation in white blood cells and irregularity with red. But nothing to write home about.

It took 6 weeks for the ANA results to come back.

Yes, I don't have rashes or anything like that. It's purely muscular, fatigue etc.

So the GP has asked for advice and guidance from Rheumatology and I have a referral in for Neurology due to some more Neuro symptoms, also the calf atrophy and fasciculations are a worry. An EMG would rule out more worrying conditions like MND (of which there are several types).

I did read that you can have a non dermal version of Dermatomyositis but I'm not fixed that this is the answer.

It's more that it hopefully gets me in a better direction for diagnosis.

Thanks for the links I'll check them out.

[sewh in reply to SoonToBe]

Thank you for the understanding myositis link - really helpful - especially link to Dr. Bhai - just the medical approach I was hoping for.

[SoonToBe]

I agree an EMG would isolate whether muscle or nerve related. MI-2 has only been seen in a low percentage of DM case - around 11% of a 357 cases in a paper published in European Journal of Dermatology (Apr 2020). Of these nearly 80% showed some form of skin impact. So it is possible but at a low percentage risk. I maybe you have such but a skin biopsy is better to assess for this in particular. Polymyositis is just as likely as it sounds as if they ran ANA (this checks more for other autoimmune conditions like RA). I'd ask for a myositis panel to be run - that will tell better if you have any of the known myositis antibodies. Low CK does not always indicate that myositis is present (mine has never been above 600). This is a good reference for dermatomyositis so check for the other skin effects other than a rash - myositis.org/about-myositis... PS. My genetic tests took 9 months to come back and my myositis panels (had a few) generally take up to 6 weeks.

[DixieBlue]

I was diagnosed with IBM this April after 12 plus years of symptoms you describe only to be sent for blood tests G.p's beyondpathetic. Long story short I forced a referral to a Geriatric consultant (I knew no other way) I then had Muscle density tests I was then referred to a Neurologist who suggested (I insisted) on having a Muscle Biopsy, as far as I know that is the only definitive way forward to a diagnosis which I had in March to get Diagnoses of IBM in April. Hope this helps. BTW tests were done in Walton Centre Liverpool.

[Eogz in reply to DixieBlue]

Also really helpful thanks very much. As regards the ANA testing it was helpful as it identified an issue.

Which is the furthest I've been in over 5 years.

I'm glad, which sounds really odd to be where I am.

The limbo experience isn't nice and opens you to much gaslighting from the medical and bureaucratic disability (DWP) people.

So either way, I have a distance to go but it's in the right direction.

[stiff19]

I hope you find the answers. I have had symptoms for nearly 7 years and have ptosis and skin problems. I realise diagnosis is difficult but fear once bloods show nothing just dismissed despite symptoms. I find this infuriating as bloods can be helpful but not solely diagnostic. I also had nerve tests which were said to be ok but still suffer and it seems crazy that discharged after this yet suffer. a week of high dose steroids helped somewhat in delay yet was not given a muscle biopsy as they had said would and just got discharged. I know I could have many things as a possible but the medical care is very poor locally. with dystrophy in sibling I worried about this to a degree but my skin problems lead me to think of myositis I especially had signs of dermamyositis and indeed bloods in way of Ana tested for but told ok. I feel totally gaslighted by nhs , my symptoms are not denied just not answered and yet no ones looking for answers. I was initially diagnosed fibromyalgia yet its progressed a lot and huge inflammation and skin problems and no way fits fibro so now told fibro and unifying diagnosis of other symptoms and I cant accept that they do not fit together the symptoms. its a long hard journey, I was getting worse before steroids they helped some but now its all returning to previous state before steroids. Tests were done in 2019 and neurologist and rheumatologist both pass the buck as in rheumy says need a neurologist and neurologist says I need a rheumatologist and dermatologist and team say neurologist but he was useless. My daughter is now showing signs past few years of similar and its worrisome. I feel a muscle biopsy should have been done. I was taken off statins at beginning of journey as they thought they might attribute to weakness and ive still progressed without them over the years but I do seem to have flares and wonder if this is normal or am I looking in the wrong place. my thigh and forearm hardened at one point and scan showed nothing and now left very weak and have lost muscle and arm looks skinnier since. I feel I need an expert to rule in o out as nhs are not helpful locally and my life is so altered due to health. I feel for you and can relate and wish you all the best with your journey to answers

[paintermanic]

So sorry to hear your problems and lack of help. All I can say is, make a nuisance of yourself and persevere to try and get answers. If you are not well, then badger the doctors. Also do more searches yourself online etc. Are they checking for the right things in the blood tests. Make a detailed note of your symptoms every day and type them up, and take them with you. Thats what I did when I went to see the rheumatologist so he could see my deterioration from the start. Do keep trying. All the best.