Autonomic Neuropathy

[Galaxy2]

Has anyone been diagnosed with an autonomic neuropathy as a result of lupus or sjogrens? I would be really interested to hear from you.

Thanks Jenny

[Hidden]

Hi Jenny. As you know I have a progressive small fibre neuropathy but also have wondered about autonomic neuropathy as I don't sweat much at all now even after rigorous exercise and have loss of sensation in my pelvic floor (putting it politely!) and also have lost my sense of taste and smell to a great extent. When I look these up they often go with autonomic neuropathy - which can often go with advanced small fibre neuropathy too.

As you know I have a diagnosis of RA but it seems determined to go in other directions just now. I know you suffer a lot from dizziness and although mine has been much better since I stopped taking Amitriptyline and started Duloxetine instead, I've had a wonky day today - not on the same level as previously but definitely a day where things aren't very stable when I'm upright. Also my mouth is extremely dry just now and the dentist confirmed this so am thinking it might all be part of Sjogren's and autonomic neuropathy. I will ask when I'm having neuro checks in a few weeks time and let you know what the consultant says about this as I'm not sure that Sjoren's is something any of my medical team have even considered. Tx

[Galaxy2 in reply to Hidden]

Thanks, funnily enough I was going to send you a message about this x

[misty14 in reply to Hidden]

Hi Twitchy

Good luck for your neurological tests. Let us know how you get on. Hope 2015 is a healthier year for you. X

[misty14]

Hi Jenny

I may well have an autonomic neuropathy, it depends which nerves are affected doesn't it?. My legs and bladder are the problem, numbness, tingling , pain. What are your problems and have you started treatment?. I find steroids help greatly. Happy New Year. X

[Purpletop]

A very interesting subject. I understand that autonomic dysfunction is a feature of autoimmune diseases and can express itself in many different ways. I got the feeling, however, that there are few specialists who can diagnose this, so I'm impressed that you've managed to get a diagnosis like yours.

Would you mind telling us more about your symptoms that led to your diagnosis and which specialist diagnosed it? And what treatment has been suggested for it?

[Galaxy2]

Hi There

Well, I had a small fibre neuropathy diagnosed a few years ago which was thought to be as a result of vasculitis and peripheral nerve damage. I have for years on and off had a problem with balance and light headiness but it comes and goes I have also had a problem with a fast heart rate and been investigated for it and although yes it is tachycardic I have always been told there is nothing wrong with my heart. In the last few months my dizziness has got really severe and my heart rate and blood pressure is fluctuating like mad, any small effort and my heart is pumping like I am out on a run. I saw my rheumatologist recently and he suggested that I have an autonomic neuropathy now too, I have further tests in the New Year and hopefully will get to the bottom of it because at the moment aren't going out as I feel like I am going to faint every time I stand up.

I already take prednisolone, mycophenolate and hydroxichloroquine and will wait to find out what is suggested next and will keep you updated.

Happy New Year and thank you for replying

Jenny

[bennett in reply to Galaxy2]

I was diagnosed with autonomic neuropathy some 5 yrs ago. It was diagnosed by a cardiologist as my blood pressure, pulse rate and temperature were all very low. This went on for many years intermittently until about 5 yrs ago when I was constantly feeling very faint, and fainted on one occasion. I couldn't rush or I'd feel lightheaded. Every time I went to the clinic my B/P was very low, so much so they would ask if I was OK and if I drove myself to the clinic. However, I was referred to a cardiologist who ran off some tests, such as the tilting table, B/P standing and lying and a few others. My B/P did the opposite to what it should have done. I was put on B/P tablets which are working a treat and have been for the past 5 yrs! Other symptoms I have developed over the past few years are: little sense of feeling of hot and cold unless it is extreme either way, hardly sweat at all, low blood sugar level on and off and for no particular reason. I have been told there is no treatment really for the majority of symptoms. My liver is also affected but they think this may be an other auto immune. Trust this is of some help.

All the best for 2015 - trust this will be a better year for everyone!

[Galaxy2]

Hi Bennett

Thanks for the reply, I am seeing a cardiologist too soon so hopefully can get some help. My b/p and pulse fluctuate so much instead of being too low or too high so I 've been told I can't be on tablets for either high or low b/p or beta blockers.

All the best for 2015

[Natura]

My heart has been racing lately as well...very recent....heart palpitations. I have a mitral valve prolapse that never bothered me all these 50 or so years. Had a recent cardio check (you know the 10 sec run with stuff put on my chest and a tape run) and showed nothing. My brother who also has the same thing says he cannot drink caffeine of any kind. I have been eating too much chocolate lately and attributed it to this. But, I also have been having trouble breathing. I feel like I hold my breathe a lot due to stress or whatever and feel by brain is not working my lungs. I was looking into autonomic neuropathy since I feel like this is what is happening to my lung function. I know of no doctor that would even listen to me, so I don't bother and I just go on. But, it bothers me a lot, as I have to think to breathe deeply.. Hence I need to pick up mediation all day long to deep breathe.

I hope you will post the answers you find, as it will help all of us. I am very interested to hear. I also noticed I don't smell as much sometimes, my hearing is bad, and I don't feel my feet well. On the other hand, I feel high pain when I bang a toe. Weird. Different nerve parts to the brain perhaps. We need more research. Healthier New Year everyone!

[Galaxy2 in reply to Natura]

I think auto immune diseases are so complex and still maybe not understood enough and when we have a new symptom it can take so long to get to the bottom of it, if ever as it can be so many things, not to mention possible side effects of all the medication we take. I often feel like my breathing rhythm isn't right too and I often feel like I have to take deep breaths in to get enough air in. I will certainly keep you posted with any news I have. Take Care x

[Natura]

Thanks Jenny..take care too! Let's get better 2015!

[notoverthehill]

I have similar symptoms and in July last year had stents implanted which have since given me back the use of bowel and bladder Stents were put in as I was suffering from severe arterial disease and have easd the symptons but I had never heard of this disease before and made me want to ask my rheumatologist it all fits Thank you for the information

[farmerfester]

Hi I have it I have nerve damage in the c spine with frequently affects my heart in that when the heart rate needs to increase it doesn't increase enough and causes chest pain and shortness of breath seudo angina I take blood thinner tablet to open up blood vessels and have the nitro in spray just got to take it easy g

[Galaxy2 in reply to farmerfester]

Thanks for that, it does make me realise how the more you research these topics they become increasingly complex. Jenny