Osteomylitis

[Discontent]

Last year I wrote in about an ulcerated middle digit, which I had been diagnosed with Raynaud Syndrome - being treated with a topical cream called Bacitercin, neosporeing, numerous antibiotic pain medicines. The digit became infected to the bone, which I ended up going oustide of my regular hospital to discover this was the problem all along. Mis-diagnosed.? Yes. Now as of 8-9-2016, my finger was amputated. Grief,hurt, trust in doctors who say they are Specialist has scared me away. Does anyone know of this dreadful, painful finger issue, and if so could you please share it. I am now mentally insecure about my life.

[Ozchick]

I have Raynauds that affects only my right hand. 3 years ago I also had my middle digit amputated. In fact the pain was so intense while they were still trying to save it that in the end I asked them to remove it. I do get phantom pain (sometimes feels as though someone is pushing a needle into my nail bed!) from time to time but it's gradually getting better. Doctors aren't Gods and nor are they infallible. At the end of the day it's only a finger and apart from having to adjust my typing on a keyboard (used to miss a few letters in the beginning!) I mostly don't think about it much anymore.

I have Hughes syndrome (a blood clotting disorder) and test positive for auto immune- but not a specific one. To give me a 'label' docs have settled on UCTD. It's only managed-no cure.

[Barnclown]

thanks discontent: i feel you're making important points

in my experience both osteomyelitis & rare conditions of the connective tissue in fingers are fairly easily misdiagnosed...possibly due to inexperience because few gps encounter these conditions, but also because even top consultants tend to practice by Occam's Razor (in explaining a thing no more assumptions should be made than are necessary, aka keep diagnosis simple) and misdiagnosis of this sort is even more common in unusual, complex patients like us. e.g. my primaries are vascular ehlers danlos hypermobility+ infant onset lupus + early onset primary immunodeficiency.

i've had osyteomyelitis in my jawbone misdiagnosed as "normal post root canal neuropathy"....took all the medics 20 years to realise osteomyelitis had been simmering happily in there until my lupus diagnosis was finally recovered in my 50s & medics began to take all my chronic stuff more seriuously. and i had a 14 year old malignant cartilage tumour (chondrosarcoma) in my finger misdiagnosed as "arthritis" until a brilliant ortho surgeon finally figured it out & did an emergency amputation.

Once my lupus & PID & EDS were recognised, i learned that patients like me can be prone to these sort of rare problems. now i'm older, wiser, more vigilant and proactive...if public medicine won't take me seriously when i know i need to be, i go self paying private and then switch back to public once i have enough evidence to be taken as seriously as i should be.

🍀🍀🍀🍀 coco

[Discontent in reply to Barnclown]

You know wxactly what I mean. If they do not know, do not denie me outside referrals and allow me to continue suffering now this. HURT yes I [e-mail]

[Barnclown in reply to Discontent]

I am vvv much feeling for you, discontent. Yes, we both know what this is like. Courage: now we know what the worst of them can do, we're in a stronger position to hold our own. There are better medics, and we have the experience to recognise them...and we have the evidence & arguing power to get what we know we need. Take care

[tall-tim in reply to Barnclown]

Hello Barnclown,

Re. osteomyelitis in your jawbone, how can this be distinguished from normal tooth problems, and how is this related to an auto-immune disorder?

I'd never heard of this possibility before.

I have Limited Scleroderma and my dentist has been noticing, via x-ray radiogram, patches of infection near two of my tooth roots, and wants to pull these teeth out. They don't cause me pain, so far, so I am resisting the idea. It's interesting that they may be part of my condition. Any thoughts gratefully received.

Best wishes,

Tim

[Barnclown in reply to tall-tim]

Hello tim

Although my medics think my case is v unusual, it is what it is 😉. Had we been aware I was living with the problematic combo of infant onset systemic lupus + early onset sjogrens (my main autoimmune conditions) & primary immunodeficiency (hypogammaglobulineamia G, A, M + lymphopenia which predispose me to infections - in my case this is not due to immunosuppression meds) + vascular ehlers danlos (primarily a connective tissue disorder which creates a lot of oral problems) perhaps my medics would've suspected the 2 decades (yes 20 years!) of 24/7 persistent symptoms in the roof of my mouth directly above a root filled upper molar might be due to a bacteria-driven pocket of sepsis (rather than benign root canal-procedure-related neuropathy)

But the jawbone infection wasn't recognised for what it was until the infection boiled up 5 years ago at just the same time my underlying primary & secondary immune dysfunctions & connective tissue disorders were FINALLY being acknowledged. When the problematic molar was extracted, I'd only just started systemic treatment for lupus (daily hydroxychloroquine at that point) and it became clear the infection was well entrenched in the jawbone & adjacent sinus. At that point I was in my late 50s

NHS X-rays revealed both a significant lucency in that section of jawbone & also that the molar roots had grown through into the sinus area (a classic situation encouraging infection in patients with my comorbidities).

so I went onto 5 months of daily high dose flucloxacillin while NHS ENT & maxillofacial clinics investigated. CT showed I'd responded well to fluclox, thank goodness, so no biopsy & no surgery.

Now all my medics are vigilant re both osteomyelitis & osteonecrosis - especially in my jawbones (am now getting iv zolendronate for osteoporosis, which puts me at continued risk of these conditions)

Hope something in there is useful. Hope you'll feel free to PM me if you'd like to continue on this

🍀🍀🍀🍀 coco

[tall-tim in reply to Barnclown]

Hello Barnclown,

What an extraordinary story of struggle you have. I don't think I can add anything, except to say I touch my metaphorical hat to you with respect for what you are putting up with on a daily basis. It's so sad how long it takes for effective diagnoses to be made.

Thanks for filling me in about tooth & jaw related factors. People tell me root canal dentistry causes problems - I suspect you are living proof.

Best wishes,

Tim

[Barnclown in reply to tall-tim]

Thanks 😉 And yes: I believe dentists now view root canal a bit differently....vs back in the 1990s... progress of sorts I guess...

[tall-tim]

Hello Discontent,

I have had chronic ulceration in my digits over the years but nothing so extreme as you have suffered. Last year my two middle fingers swivelled round at 90 degrees and are now stuck there! The ulceration process has now stopped due to my treatment regime (low doses of Sildenfil + Prednisolone + Methotrexate) since last August. I found that it was important not to block the outflow of the ulcer liquids otherwise they stay put, go inwards and fester. Topical bactericidal treatments did not help with this.

Where doctors are concerned, I find that you have to be your own best friend and understand as much about your condition as doctors do. Via my GP I got a second referral to the Royal Free Hospital in London - they purely specialise in Scleroderma, so it might be worthwhile asking your GP to get you referred ASAP. They will get a critical view over what's going on, and then inform your GP and local consultant. The more knowledge the better!

Meanwhile, you have my heartfelt sympathies. Perhaps think of losing your finger as a positive outcome. Your woundedness is now a visible thing - and that's OK.

Tim