Myositis Diagnosis Problems

[spiceyandsugar]

Hi Everyone

Please can anyone help at all? After being diagnosed with sleep apnea, 6 months into treatment I deteriorated. I had joint inflammation (current evidence is suggestive of gout); possible Vasculitis shin rash (now gone), recurrent ulcers, chronic low grade fevers, fatigue & problems walking which is pretty bad now though can still walk just about. 2 rheumatologists ruled out lupus; consider behcets unlikely & decided it is fibromyalgia. Problem is I had 2 raised CK levels around 1350 each time 4 weeks apart. 3rd time ck was just above range @ 207 & no thigh inflammation on mri. I know I definitely did not do anything physical during the elevations but my body suffered stiffness & costochondritis. Possibly breathless episodes.

My rheumatologist is seeing me in 4 months to see if things have settled but I wondered, could they be missing something? Could it be inclusion body myositis (I'm 38) or early stages of polymyositis? I should be relieved except my walking is so painful & hard, it's like I can't walk any further. I struggle look after self & toddler. Please does anyone have any ideas?

Much thanks

Vic

[Jo-Goode Administrator]

Hi Vic,

It's unlikely to be Inclusion Body Myositis, your symptoms and CK rise could indicate an auto inflammatory condition. Although the doctors sound like they have done a number of tests they haven't given a good explanation as to why you are struggling so much with the symptoms you describe.

If you continue to decline, or don't feel you have any improvement to report when you see the rheumatologist and they can't offer any help, I would suggest a second opinion with a clinic that is more familiar with Myositis, as well as other auto immune conditions . If you let me know where you are in the UK I can suggest someone for you to see.

Regards,

Jo

[spiceyandsugar in reply to Jo-Goode]

Sorry late reply, I have terrible memory problems & actually forgot I posted. Thankyou for your help. I'm just out of Newcastle.

One thing I forgot to mention is that after my appointment my mam told me she suffers the same burning thigh muscle pain that severely limits her ability to walk. Then like me there are periods when she can walk extremely fast! She also finally realised from a lupus poster that she really does have all the sign if lupus & I'm working on getting her to GP. she has phobia

Xxx

[spiceyandsugar in reply to Jo-Goode]

Meant to also ask why you thought not inclusion body please? My mam has same struggles just discovered. Yes, I actually do fit criteria for behcets but no one wants to consider it. Think they are waiting for something bad to happen to me first, which is what I want Avoid. Plus I consider not being able to walk far and lack of quality of life and pains sufficient reasons to take me seriously. I now get a carer every morning as I'm so exhausted & unwell every morning.

Thankyou again for your help xxx

[Goldyukr]

You poor thing. Sounds like you've really been struggling. It took me a long time to find a doctor who could really help. Did they do an EMG? Yes, please do go see a second doctor that is familiar with myositis. There can be so many factors. For ex, my blood work doesn't show it, but the EMG and my response to prednisone does. I also was told by one rhuematologist fibromyalgia, but joint inflammation doesn't come with that. They just didn't dig deep enough. Hope you can find some answers soon.

[spiceyandsugar in reply to Goldyukr]

Thank you, sorry again late reply. No emg which surprised me after reading about it. But I'm going to keep pushing for biopsy. Or emg at least. Problem is that Dr Griffiths is my second opinion. My first opinion was incompetent tbh. He was rude & dismissive & never knew I'd been diagnosed with fibromyalgia 2years previously. Because of him saying medical unexplained symptoms I lost my pip Tribunal. Though now put official complaint in. I think Dr Griffiths is specialist in autoimmune / autoinflammatory; definitely lupus anyhow. But perhaps not so much with myositis because I had low numbers or the srp antibodies & she said she hadn't heard of them. Due to low numbers it was a false positive. My ck was back to normal at the time. It's advisable to repeat it once again but she didn't think so. I asked her to repeat ck which she said she would in December. I'm not sure I'll get a 3rd opinion even if it's to the myositis clinic at rvi which I've just discovered. I am getting my gait assessed & walk stick as I'm clumsy & fall. My gp thinks if the see weakness then it's worth asking Dr Griffiths for biopsy. Frustrating because my physio saw weakness he implemented a low grade regime to help me yet I wasn't referred for that!!

I guess I keep push. Thankyou for your kind words xxx

[stiff19 in reply to Goldyukr]

I was interested to read your reply I have suffered for years with many symptoms, bloods im always told ok but then after sending photos and things worsening was offered high dose steroids. there was no immediate help especially with eye droop which still continues on and off and weakness etc. over 8 years and no diagnosis or attempt, I was told because of the help I got from hydroxy (3 months) I felt they helped my hands but other symptoms arose and the help from 7 days of high dos 60mg steroids which alleviated the intense foggy head and inflammation and skin etc but symptoms still persist I should see a rheumatologist. he asked to check tender points and when I asked why I cannot splay fingers of own accord or bend toes or turn foot up and muscle weakness he said likely soft tissue problem but I can see nothing rheumatological, I also had the reocurring mouth and throat and tongue ulcers , unable to open my mouth wide enough he just sat down. This has all become my new normal but far from normal and they always pin me with fibromyalgia which doesn't answer ptosis fluctuating and skin rashes and when I said this to him he said no the rashes are not fibromyalgia.🤷‍♀️I also have joint inflammation.

they look no further than bloods, and I never had the muscle biopsy I was told id get so I have no idea what inflicts me but interested that you say blood work doesn't show it as im told they can see my symptoms but have no answers so thinking maybe worth seeing a myositis specialist and wanted to ask what they do to help find if not in bloods as at wits end and local health trust abysmal.