Muscle Twitches and Hughes ?

[Jimalos]

Hi, In currently I am not diagnosed with APS, but my Beta-2 Glycoprotein 2 IGM is 28.75 POSITIVE

(0-20 is Normal Limit)

What I am experiencing is chorea-like movement disorder, mild but so annoying muscle twiches.

Muscle flings all around me, difficult to see and diagnose. And also having some difficulties to walk mild coordination problem also hard to see outside (All these muscle twitches, walking problems appeared suddenly one day after I wake up ! )

I havent had any problems, blood clots, bruising or any skin problems.

Neurologist wanted all my detailed blood test, there was no abnormality BUT ONLY:

Highness of anti-β2 glycoprotein I IGM antibody,

and POSITIVE Anti-Nuclear Antibody.

Thanks

[Manofmendip]

Hello and welcome.

I am slightly confused are you say that you have positive tests for:

anti-β2 glycoprotein (anti-B2GP1);

IgM; and

Anticardiolipin Antibodies (aCL)?

If so, that sounds like a positive diagnosis, as I understand it.

Where are you from and who is managing your condition?

Best wishes.

Dave

[Jimalos in reply to Manofmendip]

I recieved the blood tests from my hospitals internet website. My doctor haven't see the results yet. Waiting for my appointment. Thats why I am not diagnosed. When I research for my abnormal anti-β2 glycoprotein I IGM I found my muscle twiches must be from Hughes.

[Jimalos in reply to Manofmendip]

Anticardiolipin Antibodies (aCL) is not revealed / not requested from my doctor.

Does anti-β2 glycoprotein is enough for APS diagnosis or Anticardiolipin Antibodies (aCL) must required ?

Thanks for wishes.

[MaryF Administrator]

Yes to the feedback from my colleague Dave! and the information he asks for his relevant as we have a list of specialists across the UK, GP's and other medical staff find the list helpful in terms of pertinent referrals. MaryF

[Manofmendip in reply to MaryF]

Fully agree Mary.

Dave

[Jimalos]

Everything is completely fine, B12 is well balanced.

Copper deficiency in urine & blood (No Wilson Disease). Also, ferritin & zinc deficiency going on. Elevated bilirubin. Nothing else.

If those symptoms will disseappear with anticoagulants I will be the happiest man on earth.

Thanks for reply.

[Manofmendip in reply to Jimalos]

I had two bouts of hepatitis in the 1990s, for which no viral cause was found. When I saw Prof Hughes, in 2002, he said that it was most likely to have been sludgy blood in the liver and, indeed, when I was put on Warfarin my LFTs returned to normal for the first time in 6 years.

[minnime63]

Hi there, I was (finally) diagnosed with APS with chorea after a year of neurology tests &etc. It was diagnosed in January of this year with two positive lupus anti-coag tests and symptom history (non specific white matter, brain/muscle pain/cognitive problems/livedo reticularis/Reynaud's/odd gait/ muscle twitches/arms flailing/legs jerking, etc, etc). For a while the neurologist thought the movement disorder was caused by the antidepressants i was on - it is entirely possible for that to be the case in some instances.

Last August the LA was negative. Sometimes it's just a waiting game. Have you had any MRIs? Ask whether you should be referred to a rheumatologist. Apparently, according to my rheumy, this is quite a rare thing - she said she'd not seen it in person before! Keep us updated x

[loppylou68]

I have been diagnosed with dystonia and Chorea before diagnoses of Aps.

I am struggling to walk etc and was hoping that anticoagulation would cure me of these difficulties. My brain also shows small vessel disease caused by undiagnosed Aps. Originally told it was anxiety and or medication 4 years ago. would we of been less damaged with the correct diagnoses sooner.

Treated for depression for over 15 years to find it may well of been APS

[minnime63 in reply to loppylou68]

Loopylou68, I saw Professor Hunt at Guy's for the first time this week - wow! She was so thorough and I feel much more positive now! Started me on Hydroxychloriquin - she said it will sort both the pain AND the Chorea. She wants my INR to be 3-4, rather than 2-3 but needs to check with Neuro because of the aneurysm. Am attending her clinic at St Thomas' next month - she wants to keep me under her career because the Chorea is rare and little is known about it outside London. Costly to keep travelling to London, but what price life? I hope this gives you some hope x

[loppylou68 in reply to minnime63]

That's fantastic news I'm back at guys in 2 weeks will discuss with new doc sangle as kashmater left. May look into Dr hunt.

Not sure how much more my body can take.

Neuros took years to diagnose me as said anxiety and meds probable cause initially Started with mild tremor.....

I've got so much worse in the meantime luckily through my own research asked for rheumatologist referral which discovered Aps and re referred on to lupus clinic where I saw kashmater for initial second opinion appoint results showed high titles positive

Last Few months started anticoagulation with heparin injections hoped that would make things better but symptoms seem much unchanged but glad finally to of been doing something positive so disappointed not better results

supposed to start that antimalaria med when return. Have you responded to those meds as have trouble getting up now and pain getting to feet is unbearable.

I am and was so scared of aneurysm / bleed / clot happening before I finally got some actual tretment why oh why does it take so many years to get some help

Thank you for your response it is good to know I'm not alone which for last 3 years I have been

Dreading the cost and the whole process of getting to the shard it's impossible to get to and has dramatic response to my body for days afterwards

Hope your on the mend you have given me hope x

[minnime63 in reply to loppylou68]

I've been the same, pain in ankles, knees and hips. And yes, really suffering after the London trip! She also diagnosed Lupus. I am so relieved as since diagnosis in January I've had two TIAs and a lacunar infarct. Brain fog - where did you say you were? Maybe ask about attending Professor Hunt's haematology clinic at St Thomas'? She is definitely the lead in Chorea like movement. Maybe we'll meet there some time?!!!