I was recently diagnosed with a "lupus-like connective tissue disease." I kind of assumed this meant SLE, but I'm not 100% sure.
Anyway, I had to go into hospital suddenly a couple of days ago because my throat started swelling up. Not long afterwards my neck and head started jerking uncontrollably, so much so that the doctor was unable to even look down my throat to examine me.
To cut a long story short they sent me home from A&E completely puzzled and my symptoms were not getting any worse, so I was glad to leave. The head jerking was attributed to stress by the duty doctor, but I don't buy that.
The swelling in the soft tissues and skin round my throat has now subsided, as has the head jerking.
I also a couple of weeks ago experienced a complete loss of grip in my hands for a couple of days during another flare.
What is going on???
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ChocolateTeapot
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Hi - I have had exactly the same thing often over the last four years after having a brain haemerage and then being diagnosed with lupus. Until my consultant got my meds right I got the head jerking - and full body jerking every day - sometimes dozens of times a day - and was always being rushed into A and E - and they never knew what it was and were always baffled - like most medical people are over this disease - and they do often say its stress - what a load of absolute rubbish - its the lupus - I now know there are many other lupus sufferers that suffer from this same thing so you are absolutely right - what I have learn't with this disease is to listen to your instincts - WE know when something is not right - and when its not stress related - the medical people always say this when they don't know ......its soooo maddening.........I also get the swollen throat and neck and head and that comes and goes - so yes it is all lupus related............I am still trying to get answers to these problems myself - so please stay in touch and we can give each other any info either one of us finds out or gets and we can help each other - thats why these groups/sites are so good - I find that these are better ways to getting information in helping to sort out diagnosis and problems.
By the way I also get loss of sensation, feeling in arms and legs and loss of grip in hands.................all part of SLE...................what meds are you on?? Take care and hope you get the meds you need to keep these problems stable. All the best and please stay in touch.
Wow, Aloma. Our symptoms sounds so similar. I have just started reading a book about a woman who, as it transpires, as something called CNS Lupus (Central Nervous System Lupus) and her symptoms are also very similar to ours.
I have tried to do a bit of research on the kind of specialist we might need to see, and I reckon it's probably got to be a neurologist with an interest in Lupus.
I have found one based at the Royal Free Hospital in North London (not that convenient for me as I am South West London) and I think the waiting time for referral is about 4-6 weeks. To see him privately would probably cost a bomb because of the extortionate prices of things like MRIs etc.
Is there a function on here to private message each other? I am new to the site. I could give you his details if you like.
I have mixed connective tissue following Lupus SLE but I also have a head which twiches and loss of strength in the hands as they have their own tremors. For 20 yrs I was told it was dystonia and I had botox injections every three months. I stopped those 2yrs ago due to bringing its own problems. I have read that the tremors can be from the lupus for me they havent got worse over that time but it does give me tight shoulders so I see an ostopath(you know what I mean) regularly. It makes socializing interesting because I walk into doorways and spill drinks and it is a laugh to go to the dentist/ hairdresser etc and the more you tell yourself to relax the worse it gets. I find sleeping and relaxing a nightmare (its 2.45am) I do take medications but that can wipe out the next day if I take them to late at night or if I take an extra pill (they let me control my meds as needed). Good luck with giving us hope for an answer, please keep us posted I believe that this is far more common than anyone knows, I used to work in retail and I had 3 female 1 male customers who all had tremors and it was nice to meet others.
NiksB - thanks for your reply. I have seen my GP today and have asked for a referral to a particular neurologist at the Royal Free Hospital in North London. His speciality is neurological problems and inflammatory disease, so fingers crossed he may come up with something positive. I will keep you posted.
Thanks also Thaddeus for your reply.
It is so good to have others to connect with on these issues.
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