Ive had so many tests over the years! The only thing that comes up is Lyme and bartonella, which I’m currently treating. This specific symptom started about 2 months ago though and since then I’ve had bloodwork for MG (blocking, binding, musk). All 3 were normal. I had a few antibodies show up on the binding test, but 2 neuros told me that’s still considered normal and not indicative of MG. One even told me it’s a useless test. I’m seeing a 3rd in a few weeks. They all tell me nothing is wrong. I haven’t had any nerve testing done, bc they told me they didn’t think I needed it since my symptoms don’t match anything neurological. I’m considering doing them just in case.
What other symptoms do you have?
Well, it started exactly 2 years ago with some intermittent shortness of breath. Which gradually became more frequent. At first, thought it was panic attacks, then thought it was a problem related to my afib.
It worsened and I lost a lot more weight, started having fatigue in my limbs, weird feelings of lumps in my side when I was lying down. The breathlessness was usually fine when I lay down.
Fast forward 2 years, I have CFS diagnosis (although, I suspect it was brought on by whatever has caused this breathless issue), increased heart issues due to my afib. I'm short of breath all the time but much worse on exertion. I struggle to breathe more when lying on my back or either side. Weirdly, it's not as bad when I first wake up. I crash badly when I overdo it, but again, what is ME and what is the breathing problem?
All I know is that several docs and specialists have said that it's either a rare, often unheard of symptom of CFS/ME, or it's totally unrelated because shortness of breath doesn't normally present like this with ME.
How about you?