Originally Posted by JoannaP79

I know I'm on here every week with a new symptom! Well I have awful new symptoms. I've felt this mildly already for some time but now it's got really bad. I have awful digestion problems which seem to coincide with awful heart flutters, and shakes, unbelievable weakness, sickness, the lot. Mornings have been so bad at times over the last few weeks that I feel I'm going to die. I've never known a full body experience like this. Once I've been to the toilet it tends to calm my whole nervous system down. Someone on here kindly referred me to something called dumping syndrome and I couldn't believe how horrendous the symptoms of that can be on your autonomic system. I have all these symptoms. It mentions changes in blood pressure and I have extremely low blood pressure already. I've got fasciculations all over including in my digestion. I can see it pulsing through my skin in my digestion.
Anyway, I'm proceeding with the muscle biopsy as I realise I have to try figure this out, even though I'm actually afraid to hear it.
My main question though is to ask whether anyone here in the UK has seen an autonomic specialist and whether it helped? I have a good neuro but he just asked me to lie down and then stand up and did blood pressure at both points. It was fine so no more said. I believe categorically 100% that my autonomic system is affected. I don't know whether autonomic issues are so specialist that its worth trying to find someone who specialises in this specifically.
Is it worth seeing someone about this and can anything be done to help manage symptoms? These symptoms are possibly the worst. I've had to have back up diazepam for when it's real bad as I feel like I'm going to die. If anyone has ever tried amphetamine,(only once as a youngster!) my worst attacks feel like an injection of the strongest amphetamine and you are about to die on it. It's just beyond awful.
I'm seeing a Gastro who acknowledged that autonomic damage can affect my digestion in the way I've explained. Not necessarily gastroparesis but an autonomic problem. I'm having an endoscopy but I do not believe any of these tests can actually demonstrate this damage. I was almost hysterical on my G. P this week as when the digestion spasms are bad my heart is through the roof and the amphetamine like panic goes hand in hand with it. She looked at me like I was having a breakdown and am off my rocker.
Does anyone here have these issues? Any autonomic issues making you feel this bad?