Does anyone here have Opsoclonus Myoclonus Ataxia ( OMA)?
Diagnosed with this apparently rare (in Adults & in UK).
After a near fatal Viral Meningitis in Oct’23 was discharged with cerebellum Ataxia. No further help was available & my GP admitted very little is known about Ataxia. Referred me to Neuro-physiotherapy who decided it could be FND but referred me to neurologist. It’s now almost a year on with symptoms worsening. The latest being swallowing difficulty & choking. After another Lumbar Puncture (the 4th one) & numerous blood tests. It’s concluded OMA which is very rare in adults. I’m to have Steroid infusions which will/could result in remission???
As so little is known & documented ……. I’m worried & afraid I’m being used as a research.
Hoping someone here has experience & can share with me please 🙏🏻
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Lidldidl
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Firstly…I don’t have this specific diagnosis myself but…I’m Admin on a Facebook Ataxia Support Group and I can see Opsoclonus Myoclonus has been mentioned in various Ataxia Support Groups.
If you are on Facebook…search for Opsoclonus Myoclonus Support Group..there are several links.
Be reassured, you aren’t being treated as ‘research’…Steroids are ‘the first line of defence’ with this diagnosis.
Yes, OMAS (Opsoclonus Myoclonus Ataxia Syndrome) is rare, but some studies have been done on collected data from known cases (see links below).
Summary: it's usually either:
(1) post-infectious (Cerebellitus), or
(2) tumour/cancer related: PCD, (Paraneoplastic Cerebellar Degeneration), where anti-cancer antibodies (e.g breast or lung tumour) cross react with the cerebellum.
(3) in "idiopathic" cases, a post-infectious antibody is often eventually found too, hence yours taking four lumbar punctures before they could change and name your diagnosis.
Different causes mean different people have different antibodies, including anti-Ri / ANNA-2 antibodies, anti-calcium-channels (anti-CV), anti-NMDA-receptors, and rarely anti-GAD65 (like "Ataxia with anti-GAD antibodies" which causes ataxia and epileptic symptoms similar to OMAS, or SPS - Stiff Person Syndrome).
TREATMENT
Steroids, and if they don't work on their own or it recurs, you could have IVIg (Intravenous Immunoglobulin, an Immunotherapy, usually one called Rituximab). Alongside rehab with physio and occupational therapy, these seem to work well for most people with post-infectious OMA, often leading to a full recovery. 🙂
oh yes! Than you so much AbbeysAtaxia - its so good to read this. I’ve been called in for a full body CT scan before starting Steroid infusions & this would explain why. No explanation was given as to why the scans were necessary in believing in positive thinking that there is no tumour or cancer 🙏🏻I’ll know Steroid is the correct next step to recovery. I’m so grateful for your reply xx
Had the CT scan, waiting results in around 3weeks. Started the Steroid infusions & now doing the 12 week reducing orals. To be perfectly honest- it’s set me back ……. Balance, speech, swallowing, gone pear shaped 🤷🏼♀️. I’m praying it’s making things worse before fixing. Thanks so much for caring xx
That might be a good sign - CT Scan reports only take 24-48 hours to prepare - so if they'd found something concerning that needed more tests urgently (e.g. other scans, biopsy, blood tests for cancer etc) I presume they wouldn't leave it 3 weeks, and would've have told you about it and arranged "urgent new appointments" when you went in for the infusion appointments, or else have rung or written to you. Hopefully this will be confirmed in a few weeks.
If the Steroids haven't helped, have they suggested trying Rituximab yet?
It's unlikely your ataxia symptoms worsened due to steroid infusions - that's not a known side effect of steroids alone. Instead, it may be an OMAS relapse, e.g. flu or covid-19 that cause a temperature can trigger a flare-up of symptoms again, along with other causes of relapses. Maybe that or something happened during your steroid treatment, causing them to temporarily worsen again?
As the old sayings go, "take it one day a a time" and "Hang in there", because recovering from OMAS can be "a bumpy road"...
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