Hi en bloc, thank you for all the info you have given me ref muscle biopsy, it did encourage me to go ahead. I fear I've made a mistake in that my tricep was biopsied. My legs are significantly worse but as I have developed strong weakness in the arms the surgeon said let's just go there. My symptoms are systemic so hopefully this isn't a bad choice. I was so worried about the pain and my leg pain is worse that I just went along with it. Will see what the results say.

Suggested cardiologist tests are tilt table, ecg, 7 day holter, cardiopulmonary exercise test. Think that's all. I can't tell what my hearts doing but it feels horrible. It's more than palpitations. I often feel it has missed beats and can feel electrical impulses almost setting it totally out of rhythm. Sometimes it's so severe I will jolt upright in fright and take a huge breath. My breathing pattern changes and I feel I cannot get oxygen in sometimes. This can keep me sat up awake all night. I get severe adrenaline rushes randomly which initiate feelings of overwhelming fear and impending death. It was so bad once I was sat with a relative begging to go to hospital and crying last week, I feel quite embarrassed about it all but it felt like I was dying literally. I laid down and focused on breathing and it calmed then. I don't know if my blood pressure is shifting on standing. It's always quite low and didn't seem to vary too much. I get chest pains and tightness and sometimes I can't lie down or on my side as I feel my heart can't cope in that position. It feels like my heart is struggling and not getting enough oxygen in. I worry that it's more than POTS to be honest. The cardiologist guy was at least fantastic in that he said docs underestimate how severe the symptoms can feel for those suffering autonomic issues. I really do hope for some meds to help this. I feel that my heart does actually go from beating way too fast to beating way too slow. I can't always tell what's going on. But I'm sure it alternates between the two.
My worst attacks which go on all night are if I do too much exercise like walking all day or if I ran somewhere. That would set things off for about 24 hours. Eating can also set things off. If I ate a lot in one go for example.

Because I am having fasciculations everywhere, even my neck, I fear this is what's happening to my heart,this is after all a muscle and all muscles are affected by something going on in my body. Sometimes when I'm twitching everywhere my heart jumps and jolts me upright. I try hard to just accept and not get frightened when it happens.

There are two horrid life limiting diseases that I think about and I want to know for sure I don't have them so I really hope I get some answers soon.

Thanks en bloc, it's great to hear you have managed autonomic issues for so long. Not that I'd wish that on anyone x