Hi everyone, I was diagnosed with APS with chorea in January and, because of white matter foci, have been started on Warfarin. My INR readings thus far have been 1, 1.5, 1.9, 1.4 and 1.9 yesterday. The haematologist suggested I should be between 2 and 3.
I have arm and leg twitches and writhing movements, but also a feeling that builds up, like a pressure cooker about to blow. It starts in my head and I know I'm going to have a full body "jerk", like I've had the biggest start of my life!
Last night, however, it was a MAJOR one, with no warning. I was arching my back and tilting my head backwards to try to relieve the pain in my back. Jokingly, my partner pushed my head back further to help, and I went into massive spasm. The scary thing was that afterwards, when I was trying to explain what was going on, I was speaking utter gibberish. I was left feeling utterly exhausted, like coming round from a faint, and a real heavy pain in the base of my skull.
I would have gone to hospital but have an autistic son, the logistics last night were not good. This morning, all was fine until I was startled by a sudden noise and it happened again, but to a lesser extent.
Who do I talk to about it all? I saw a rheumatologist once, who diagnosed me then discharged me to the haemo clinic. Other than that, I have a GP!
Sorry this is long, just looking for thoughts/similar experiences 😕
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minnime63
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Wow you sound like me 18 years ago I can pretty much relate to all you said in particular the writhing and twitching. I was admitted to hospital for several weeks back in 1995 where all manner of tests came up with APS back then pretty much unheard of. Like you my INR was set between 2 and 3.
Please go to your GP today or even A&E I'm not trying to alarm you but it's important to speak with someone urgently and ask for a review of your INR mine is now set between 3 and4 much like many in here.
I won't explain the full story but due to a couple of quick home moves and GP's I sort of fell out the system unbeknown to me. My then surgery insisted on doing everything in house without a consultant and eventually it all caught up.
Several years after my original hospital stay I discovered pretty much accidentally that I'd had a TIA back then, I lost my speech and due to fidgeting my hands were almost useless. I was employed as a draughtsman at the time on a drawing board. Not good!
It almost became a running joke with my friends one referred to me as an itchy dog where I just couldn't stop writhing about. If I did I felt like I'd pop! All odd.
Anyway please seek advice as soon as possible and refer the doctors to the Hughes foundation Website if needs be.
Private message me if you wish or reply on here. The people on here are superb and very knowledgeable many with great advice.
Hi Danny, thanks for replying. I was tempted to go to A & E last night, it was so scary. I'll ring the doc. If nothing else I was thinking maybe I should have another MRI to see if there's been further damage since the last one in June last year... I was only diagnosed end January. I'll message you an update, but any further insights from you would be gratefully received!
One thing how long ago were you diagnosed? If like me it was a while ideas may of changed.
I was originally under the care of a cardiologist! Due to raised blood pressure even tho warfarin was used purely on a hunch from an immunologist....as I said that was in 1995.
I am glad you have had a diagnosis but you clearly need more support, we do have a list of specialists in the UK on the charity website. I notice Danny has answered you in good detail, you must persist with more investigations with symptoms like these. Where are you located? Do come back if you need more advice we are all out to help each other on here. Please do keep a diary of symptoms in bullet points, day by day, that way you can show anybody you see either at a scheduled appointment or regarding A&£.
Thanks for replying. My haematologist is listed on the HSF website! I will call her tomorrow to discuss these latest symptoms, and see what she says. I only saw her once and not due again till May, but hopefully something can be done sooner.
When I was on Warfarin I would have similar symptoms to yours if my INR dropped below about 3.3. You should see if your consultant will consider pushing your INR to 3.5 to 4.0. Sometimes the addition of a junior 75mg Aspirin can also help too.
I always feel better if my inr is higher. But past few months been so erratic ranging 1.2 up to 4.2. Have bloods done weekly but warfarin changing all the time. It gets confusing. When I was off work for a week my Inr was spot on. But taking things slower does not pay bills unfortunately. X
I know what you mean, Molly! Well I rang the haemo clinic for advice and got put through to the warfarin nurse that I see twice a week (the one who hadn't heard of and couldn't pronounce APS!) All she said was that they'd see where my level is tomorrow! I have a phone consultation with the doctor on Friday. What I've learned is to go to A & E next time!
Really dont want to scare or alarm but do you have an out of clinic near? The gobbldegook last night just sets bells ringing. If i hadnt rung my sister and did gobbldegook would have never known id had stroke first time. Knew straight away second time gobbldegook and brain fog. Better safe just get checked please x
if you did not mention APS, I would of said welcome to the world of FND. The symptoms are very similar without the low INR. Unfortunately FND is a very good mimic of other diseases such as Parkinson and MS.
Thanks Andrew, I had t look it up but, yes, I have heard of it under another name. My niece is a long term sufferer. I will point her to the website. I hope you are under control with this nasty condition xx
You may of heard about CD. FND is also a movement disorder but we do not have any underlining psychological trauma that is related to CD. Some say FND is the new name for CD depending what country you reside, though most of us like to segregate the two tags.
Yes my FND is under as best control as possible as like APS it is a balancing game, diet, exercise, mental gymnastics. Like being an alcoholic one day at a time.
Yes, it is CD, I think resulting from an accident at work (she was a nurse). Keep the equilibrium (I think I have a way to go yet. Continuing your analogy, the wagon has wobbly wheels!)
Hi everyone, just a quick update. I had another incident, not as full on as the first, but enough to take me up to A & E. Seven hours later I left with a referral to the stroke/TIA centre but told it was unlikely that. A subsequent day of tests in the centre and have been told there was no evidence of a TIA. They found irregularities in one of the arteries in the brain but "probably nothing to worry about". Back to square one then!
I thought afterwards that not once at either hospital visit was I asked about my INR and it certainly wasn't tested! Doesn't instill faith...
I think the only way I'll get to the bottom of this is to get an NHS referral to one of the London specialists. Any thoughts, given my attacks and chorea, of who would be a perfect match?
Yes so right you are! Get a referral to one of the London specialists. Take all the paper wth you!
You have already get a diagnose of APS. That is really good. You must have an anticoagulating drug that will thin your blood enough. If we use warfarin we usually need to be at an INR around 3.5 . We have too thick blood. That´s it. When it is enough thinned we feel much better and are "safe" from more clots.
My TIAs and microembolies or microclots never showed up on an MRI. I have all 4 antibodies there are for APS and also in high titres since 2002. It is a wellknown fact that the tiny clots are not seen on an MRI. When you are on warfarin it is important to keep your bloodpressure down.
Hope you can insist to have a referral because you need to see a doctor who understands this illness.
Thanks Kerstin, I have already learned so much from this forum, the most important being to shout louder! I had a different blood nurse yesterday who knew what aps was and agreed to a slight raise in doseage to try to push my INR up from 2!
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