Originally Posted by JoannaP79

Hi everyone,

Just wanted to post an update on my neuropathy. Still no clear indication of cause but a few things have developed. I've had to see a cardiologist -with regards to my heart symptoms and other horrible things. The description of my symptoms has led him to suggest I may have POTS. I definitely have autonomic dysfunction as these symptoms are overwhelming. I'm having a number of cardio tests- insurance aren't keen so requested further info before they will cover these.
When I saw the cardio guy and explained my whole history he then asked if I was flexible. I have great flexibility in my spine even with arthritis in it. I didn't realise alot of people can't easily touch the floor with straight legs. He then mentioned Ehlers Danlos Syndrome and hypermobility. Apparently a significant number of people with POTS are hypermobile. I'm not entirely sure about EDS as the cause but I know it can be behind numerous health issues including sfn. Not particularly happy about this as a diagnosis if it is that but I'm imagining worse neurological conditions than this so maybe best of a bad bunch, I don't know.

I went ahead with the muscle biopsy. The pain was not bad at all, I was virtually hyperventilating going in but it really was nothing. Awaiting results. I would not be at all surprised if it comes back clear,but also don't want to hear something awful.
Weakness and twitching is significant right now, I have to lie down and rest so much. I have to pace in order to make sure my son and I are looked after properly.

I really want a diagnosis for this as it is frightening me alot. Do any of you think it's worth pursuing a Spinal tap if biopsy shows nothing? I am seeing my rheumatologist in July and am going to beg for the lip biopsy - even just to help rule out sjogrens.

I also have developed horrid facial pain and pressure which has been so overwhelming when it comes on that I couldn't even talk through it.

Eating has been hard at times with stomach issues. Really enjoying special meal replacement drinks though so that's a positive.

Feeling so angry and cheated about all this right now. I am sick of watching people who are twice my age with better health and what this good health allows - comfort, financial security, relationships, not feeling afraid every minute of the day,not worrying whether you will raise your child to adult hood. This has impacted every part of my life, so upset about it all.