Not been on here for ages, had a lot going on i.e moving house
I've been getting electric shocks down the right side of my body since April and since then I can't walk straight, my balance is completely off, I get dizzy if I stand still and my head feels like it permanently in a washing machine on full spin.
This is a short list of my symptoms.
I've seen a neurologist at the end of August and he said there's two conditions that he's looking at but wouldn't say what they were, had a MRI scan on Saturday and now have to wait for follow up appointment.
Am feeling extremely low at the moment and just want to cry all the time. I've suffered with depression in the past and really don't want to go down that Rd again.
Anyway, hope you all have a great day.
Jo xxx
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JoJo0405
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I know you talked about Sjögrens/Lupus also 5 months ago. You say you have a diagnose of Hughes Syndrome. I do not know what drugs you have got for this.
What I understand you have now a Neurologist taking care of you. We have found (me also) that those kind of doctors do not understand APS. It is too thick blood we have and that has to be thinned in a correct way and high enough to avoid further clotting and microembolies.
I suggest that you try to meet with an APS-Specialist who can be a Rheumatologist as this is a Rheumatologic illness or an Hematologist as it is als a blood disorder.
I do not know where you live but please tell us and we can help you better.
I did have Carpaltunnelsyndrom and a lot of neurological symptoms before I was well anticoagulated. I also had Vertigo and your symtoms could well be that and then you need anticoagulation. I am not a doctor. I only talk from own experience.
Go to an APS-Specialist and I wish you good luck. Also stay on here please.
I've been on clexane for 14yrs as that's was when I was diagnosed with APS.
I live in Ashford Kent and I'm currently seeing Dr Elliott at the Kent and Canterbury Hospital. I have my yrly check up with her vacs in July and I told her my symptoms but she didn't appear to be too worried about them and suggested my GP refer me to the neurologist.
If the neurologist says that all OK, I really don't know what I'm going to do.
If there's anyone from my area on here, I'd love to hear from you as I currently feel really lonely and isolated about this. My friends are fab at listening to me but I know that they struggle to know what to say or do to help me.
I have not been diagnosed with APS yet but have Rheumatoid Arthritis and probably Sjogrens. For me the dizziness has been one of the worst symptoms over the past few years so I know exactly how you feel. I'm presently tapering off Prednisolone and find that for the past few months I haven't had the dizziness much at all although I've just started on BP meds and this has brought it back a little - but only when I stand up suddenly. Being off balance affects the confidence I find - because my spacial awareness in thrown and I am always nervous. Having a few months off it (don't know why) has shown me just how bad it had become. I've no answers but the neurologist was useless and just told me it wasn't neurological. I have a new rheumatologist who will hopefully get to the bottom of what has been causing all my weird and not so wonderful symptoms. Presently plagued by a tight, sore feeling in the front of my mouth/ gums up into my nose which no one can explain. I think the hardest thing is not knowing what it is - having no name makes us feel as if it must all be in our heads. But it isn't so hold onto this as if you can. You aren't alone.
If I don't get any joy from the neurologist then I'll ask our be referred to a rheumatologist and see if they can help.
My confidence is extremely low. I'm OK if I keep walking it's when I stop and standstill that's when I get extremely wobbly and dizzy.
I had to go out yesterday and my 11yr old daughter held on to me as we stood in a queue as I was wobbling all over the place. That's what breaks my heart that my little girl feels that she has to look after me.
I know it's not the same but when my children were very wee and once during my first pregnancy I had several severe episodes of dizziness. The doctors never got to the bottom of these and they settled down after a while. This latest episode lasted for nearly two years but seems to have lifted now - although I'm dropping off Prednisolone and newly on a med for high BP so hard to know what's causing or helping with what to be honest. Looking back I think that many of my symptoms have corresponded with Sjogrens or Lupus and I am hypothyroid too. I had several early miscarriages and am now constantly troubled by parasthesia/ burning/ throbbing wet sensation in my peripheries. This has been an issue for five years now for me.
I've recently moved to a new area where I know no one apart from my husband, dogs and visiting sons. So I put a lot of my heart palpitations and sense of panic down to anxiety/ stress of relocating and financial insecurity but it's so hard to know which comes first - the chicken or the egg. I'm trying to tell myself that if it's really serious it will show itself in an emergency - it's just a matter of waiting. Hoping the heart palpitations and mouth pain will settle. I've tried antidepressants but am too drug intollerent for these.
I found that counselling really helped me but am now at a distance from my counsellor and wouldn't want to find another via the NHS - can't afford private. Is there a counselling service in your area you could use perhaps?
Hi things sound a bit difficult and stressful for you, please do make sure that you get a referral to one of our recommended specialists: hughes-syndrome.org/self-he... Also I am sure Dave will come on later to tell you about balance problems caused by micro clots in the ear area which can be terrible for balance. MaryF
Is Dr Elliot known to be a SPECIALIST of APS? You need such a doctor. Was it a Specialist who diagnosed you some years ago? You know of course if your bloodpressure is quite ok?
I am still after 4 years on Warfarin a bit Dizzy when my INR is not high enough. I think you could stay on a low dose of Antidepressants. You did have those before but your Doctor wanted to try to see how you were without them. Did they not suite you?
I stay on a low dose of Cipralex 20 mg/ml and have taken only 4 drops for several years. That is a very low dose but i am a bit sensitive to antidepressants.
Have you had trouble with tinnitus or sightproblems also?
I had balance issues and saw Prof Hughes, who referred me to his colleague, Peter Savundra, at The Portland Hospital on London. Peter is a Consultant Audiovestibular Physician and, like Prof H, is a lovely, patient centred man. He gave me a complete check over and explained that my balance issues were due to ischemia of the inner ear, due to the fact that the arteries in the inner ear are only 0.1mm in diameter and that is smaller than some platelets. In APS patients, with sludgy blood, this can cause the dizziness symptoms and also upset the brain chemistry, as the brain gets confused by the dizzy turns, and this can cause other, body wide symptoms, such as numbness, tingling etc.
Prof H and Peter Savundra both suggested that I was moved from Warfarin to Fragmin and since then I have been much better.
I have seen a 'dizzy doctor' who is based at Medway called dr surenthiran. I saw him privatley and then he asked my gp to refer me nhs. He is a neurotologist and specialises in balance problems.
He diganosed me as having migraine vertigio and gave me meds which I didn't take as i got pregant and then lost my daughter then got diagnosed aps and the fragmin has taken away my dizziness.
It might be worth seeing him as you are local and could be referred to his dizzy clinic. He is very popular on the dizzy forums and has changed people's lives
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