Hi, after about three years of chasing around a heart issue with blood pressure issues ( ranging from too low to too high daily etc) I have had a stressful couple of weeks. Having had chest pain yet again, and on this last occasion persistent nagging pain for the next three days, GP advised A&E. Yet again I get fobbed off, and even worse looked down on for daring to suggest after a lot of research that it might just be Exercise Intollerence, one of the major symptoms of Autonomic Neuropathy. I finally caught up with the Cardiology Consultant after over two years of him faffing about, face to face. During the conversation when I finally got him to listen and realise that I wasn't a fool and had BP data to back it, it now seems that DAN is a an extremely strong probability. So, here I am several years down the line of untreated DAN wondering how rapidly it can advance. I have several of the other issues it causes, including in recent months "brittle diabetes". Wondering if there is anyone out there with experience of dealing with DAN, how you got it diagnosed and manage with it. At the moment it's a real struggle for me. I might add, before anyone suggests it, with the GP's help I am going to ask for a second opinion of the whole cardiology issue, in a different hospital, and will be asking GP if there is a way of diagnosing or ruling out DAN.
Diabetic Autonomic Neuropathy
- Thread starter Andrew2018
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G'day Andrew...
I'm a newly diagnosed T2, I'd never even heard of diabetic autonomic neuropathy.
So I'm sorry, mate but I can't help you out, other than to agree—as
you've said—that a second clinical opinion is a necessity. It's also
important, for all of us, to feel completely satisfied with any/all of
our medico's services, from a purely personal perspective and also
a well-considered, competent clinical one.
I'm a newly diagnosed T2, I'd never even heard of diabetic autonomic neuropathy.
So I'm sorry, mate but I can't help you out, other than to agree—as
you've said—that a second clinical opinion is a necessity. It's also
important, for all of us, to feel completely satisfied with any/all of
our medico's services, from a purely personal perspective and also
a well-considered, competent clinical one.
Fairygodmother
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I think there are some treatments that are targeted to the organs affected by autonomic neuropathy, but you would need to have a decent med team analyse the specific areas affected and the best treatments for them.
Most of the noise about neuropathy comes from the effects on limb extremities, not much is heard about autonomic neuropathy, so it’s not surprising, really, that DAN isn’t thought about.
Good luck!
Most of the noise about neuropathy comes from the effects on limb extremities, not much is heard about autonomic neuropathy, so it’s not surprising, really, that DAN isn’t thought about.
Good luck!
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Hi Andrew,
Sorry no experience or knowledge of DAN - but bumping for visibility.
In regards to your T1d you mention brittle diabetes, can you explain more about your insulin regime and what this looks like on a daily basis ? If I can help with any tips on glucose management i'll do my best as someone who tries to keep levels as stable as possible, I might be able to help.
Sorry no experience or knowledge of DAN - but bumping for visibility.
In regards to your T1d you mention brittle diabetes, can you explain more about your insulin regime and what this looks like on a daily basis ? If I can help with any tips on glucose management i'll do my best as someone who tries to keep levels as stable as possible, I might be able to help.
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Andrew, for your second opinion, you can have that (under the NHS anywhere. It doesn't have to be in your own area, and you can ask for a named referral to your chosen Consultant. Sooooo, my steer would be that you do a food deal of research before your GP makes the second opinion referral.
Just be aware if your second opinion Consultant wants to treat you, it is important you can access him easily for routine appointments, so consider regular travel to and from and so on.
You GP may resist a named referral but if you know who you want to see, hold out for it. There is nothing that prevents it.
I was guided through this whole process some years ago after one Endo sat back in his chair, 5 minutes into my appointment and declared,............ "I doubt we'll ever get to the bottom of this".
