Sea otter

Does someone have eleveted n-ACHR or g-ACHR antibodies? When all my symptoms started they were excluding a lot of things, including MG, because of variety of symptoms. n-ACHR antibodies were positive so they though it is MG. They gave me therapy, didn't work. After that I asked for second opinion, and they told these are not MG symptoms, that those antibodies don't have any significance. They were slightly eleveted three times. After I received POTS diagnosis, doctor told me that some POTS patients have eleveted n-ACHR antibodies, for some reason. I know POTS can be autoimmune, and that some POTS patients have eleveted g-ACHR antibodies. I wasn't tested for those.

Supertired, how did doctors figure out you have autoimmune dysautonomia? I have heard about it, but also that experts are not sure about that, that's why I am asking.

I have. Every weather change, pms, period, heat, infection... affects me and make my symptoms worse. Seems like I am sensitive to everything. Sometimes I can predict that the weather change is coming.

I have translated book for free. 😊 I am trying to find what to do and maybe get paid for it.

Thank you so much for your reply. After I got diagnosed I have translated one book. As you have said, there is a lot of free time, so I am trying to find what to do. Before all that I was very active, so I struggle little with interests. You said very well that other people don't have free time and we do.

I am housebound and I want to feel useful but on the other hand I don't have idea what I could do with this condition. I was thinking on some kind of "hobby" which I can do when symptoms allow me, maybe something that I can get paid for. Do you have some "POTS friendly" jobs/hobbies?

I understand. Especially the part that doctor doesn't want to interfere. That is so common, when you have dysautonomia. I am from Europe, one small country, and I went to the best ENT center in country. Also just few doctors here in whole country know about dysautonomia-pots. I've been searching for diagnosis for 3 years. But I know this is problem in whole world.

Thank you for explaining all this. I have done all tests twice, which you mentioned, except spinning chair test. Have been to multiple ENT specialists, and everything is ok. Also before pots I had some kind of awful ear inflammation, for which I think it was maybe trigger for pots, because after that symptoms started. I have problems with my left side of the body, I have shared that in post yesterday.

I don't have dizziness, but constant slightly "vision shakiness", like picture is going slightly left right, don't know how to explain. All day long, even with lying down. And I am pretty sure this is because of pots because when I did tilt test this symptom has increased. And all my ENT tests are ok.

I am thinking the same, that the cause maybe is pinched nerve somewhere on the left side. I was hoping this could be cause for POTS symptoms, but all tests were ok. I wonder if this is because of POTS or something else is going on.

I was recently diagnosed with POTS, after 3 years searching for diagnosis. Besides POTS, I have some other "weird" symptoms. Does someone maybe have similar symptoms? My symptoms are: pain and pulsing sensation by the left ear (left side of the face). Like something is standing there and is pressing something, especially when I am eating, talking, laughing, moving my eyes... Pain is spreading to left front side of the neck with some nodules and itching. Sometimes pain is going to my left side of body - arm, thorax, leg and some spazms also occur on the left side of my body. Sometimes my left side of face is red, like it is burning inside and is little swollen. It reacts usually to heat but it's not the rule. I have crackling and fullness in my left ear; with moving, sounds, swallowing; there is also no rule. Those symptoms started along with POTS symptoms, but doctors are clueless about it.