Autonomic neuropathy?

Hi, I've not posted for a while but was wondering if anyone has been told they have autonomic neuropathy? I'm being referred to a specialist centre in London but have been told I'm the only patient my consultant knows which this possible diagnosis as it's super rare but links with APS and Lupus which I already have? Any info gratefully received, cheers Sam

12 Replies

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  • Thanks for your post and good to see you back on here. Dave

  • Mary: You consistently post great links. Maybe you can help me with some specific ones. I have APS and am on Warfarin. I am attempting to make a disability work claim. My memory is awful and prevents me from most new tasks. My balance and on going neuopathy foot pain prevents me form walking for or standing more than 20-30 minutes at a time. Do you have a link that describes these for the folks at the Social Security office? TIA.

  • I will rummage around later on line.... and put some generalized papers here, probably ones I have put up before. MaryF

  • Obviously the links from the charity, also a few others. I can't help in individual cases, but there is plenty out there which may help you form a pack of information to take along. Best of luck with it all.

    hughes-syndrome.org/about-h...

    hughes-syndrome.org/about-h...

    ncbi.nlm.nih.gov/pubmed/201...

    clinexprheumatol.org/articl...

    rarediseases.org/rare-disea...

    MaryF

    hughes-syndrome.org/resourc...

  • Hi there. This is not very unusual with APS. I was evaluated at the National Hospital for Neurology. There is a Loooong wait!! Prof Hughes and Khamashta talked about the link quite often but its not that rare really. If your Consultant does not see many APS patients then possibly getting both conditions may be unusual for him.

    POTS is the most common seen.

    Hope your wait is not too bad but normally about 6 months to a year.

  • Thanks for your comments, do you mind telling me what the outcome of your evaluation is please? I also have vasovagal syncope which is linked with POTS so all seems too much of a coincidence to have all these conditions, they must be all linked in my mind. Not great about the waiting time but then again even if I do have autonomic neuropathy there is no magic cure so I just got to keep on going. I believe he said rare as in the fact he doesn't have hundreds of patients with the same condition, just me!!! he works at a huge hospital and has many APS and Lupus patients but never experienced autonomic neuropathy esp with all my many conditions and challenges. Thanks for your help

  • I was positive to two of the many tests that they ran over five days (remember the tilt test very well Yuk!) The Consultant I was referred to from Prof Hughes on this suggested we manage it without medication and so far that is working well. It depends on exactly which tests you do and which autonomic issue you have, so I cant really say if mine is likely to help you as there are so many. Best wait and get yours done and get the results as It may be that there are ways of compensating that do not involve more medications which with our condition is always a good thing.

  • Many thanks to all who have alerted on autonomic neuropathy and sent papers on it. This is something I wasn't aware of and definitely should ask a well trained Doctor next time I have an appointment.

  • What is autonomic neuropathy???

  • I have adrenergic POTS and autonomic neuropathy. Just got the results back today.

  • Hi thanks for your reply to my message and I'm sorry to hear of your diagnosis. I would be very interested in your story/journey if you wished to share it with me. What your symptoms are, who diagnosed you, if you have any other related conditions etc. I have an appointment in London in April and am hoping to get some help then but any information you have would be helpful. Best wishes

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