Am I going mad

hi since I last wrote to ask about symptoms I went to see my neurologist and he basically said he's not worried about my over active nerves in my leg and I might want to consider aspirin!! I was not impressed so I have an appt now with Ian Bruce specialist in APS at Manchester in January where I hope I can get more info and someone to take me seriously (hopefully). But I just wanted to ask if anyone else experiences active nerves in their legs like bubbles popping which i no are nerves moving but it's none stop all day and night and very often at night I feel like I have been plugged in from the waist down. I am now having serious panic attacks and anxiety thinking it's some other really bad muscular disease (I can't even say the name as it scares me so much) but when I'm being logical and thinking rationally I no I'm more than likely over reacting. I'm hoping Mr Bruce can tell me whether it's related to APS or not. But do you have any views. My mind is about to burst. I just can't switch off the anxiety. Xx

8 Replies

  • Well first of all Im really sorry you are having such a bad time and that your neurologist was so unhelpful. Unfortunately we hear that quite a lot on here. Im thinking we need to do something to educate that particular specialty as they above all others seem to get the most negative comments on here.

    Its well known that APS causes an aroused autonomic system and part of that can cause increased anxiety. So I do think that apart from the symptoms you are worried about that you should have a chat to your GP so that you can perhaps have some medication to help you get your anxiety under control. The other symptom you are explaining my be restless legs syndrome (its difficult to tell from your description), if that is the case your GP can also give you something to help with that too.

    Please let us know how you are getting on and try not to worry too much as Im sure things will be ok. X

  • HI there, hopefully you are about to see the right person, I am not sure that neurologists always quite understand APS. I know the one I saw for one of my children was most dismissive about the condition and his chronic and diabolical daily migraine with dead legs, dizziness and vomiting, he just refused to listen or help with that aspect... pushed me aside as a mother fuss pot... My daughter has a diagnosis of APS and SLE, and my sons suspected of hughes. So.. please try and relax and calm that anxiety.. do something to take your mind off it if you can.. and just flow towards that appointment. Restless legs do seem to appear on here a bit.. mine were very bothersome but reacted well to magnesium.. but I am only on aspirin twice a day, as plaquenil caused severe allergy... so... no other medications other than pain killers for it to interfere with. Go and divulge your stress level to your GP and write down your symptoms and history in bullet points ready for your big appointment... that way you can put it away for a bit, before you attend. Let us know how you get on. Mary F x

  • Yes, my experiences with neurologists have been that they are the most unhelpful and sceptical of all the disciplines. That said, my Dx of APS was by a neurologist who was very good but who has now moved from Bath to the North East UK.

    Best wishes.


  • Hi has his name for the North East been added to our list of contacts being built... if not can you private message me his name so I can do this. Mary F x

  • Hi

    Just a suggestio, but I find swimming helps to alleviate a few of the symptoms, and can help with the anxiety as you will be forced to breathe properly, so it will relaoutou as well. You sound like you could do with it. This was all decided with my gp, and you should probably seek advice from yours first before trying it. It also helps if you can find a pool that has slightly warmer water for you to use.

  • Sorry that should have read relax you as well....predictive text really gets on my nerves sometimes!

  • I know what you mean lol! Hydrotheraphy is recommended if you have a pool near by it did so much for me after my stroke.

  • I've had the popping movements in my legs too. They went away by itself though. Hope yours have vanished too

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