What autoantibodies and ANAs tests should I do?

[ChookityPop]

Good. Why do you think you have it? I have it. If you'd like to follow along on this thread learning about autoimmune causes of neurological symptoms together, would love to have you. https://forums.phoenixrising.me/thr...s-to-get-the-care-we-need.84303/#post-2345795 by the way do you know about lg1 and caspr along with vgkc? These are called "vgkc complex antibodies"

Thanks! I will follow along with that thread.
I am pretty sure I have some form of dysautonomia. I have what feels like blood pooling in my legs without swelling which compression tights etc helps somewhat with. And I have fasculations all over my body (especially in the legs). I keep the twitching somewhat in check with pacing and magnesium I think. I read on dysautonomia international facebook page that if you have dysautonomia and have muscle twitching you should test for VGKC. And if you test positive for it there is supposedly a good chance that you will respond to IVIG is my understanding.

I didnt know of those tests you mentioned. I have written those down, thanks! I will see if they test for them at the lab I will be using in Germany.

Edit: I will also test for AA SFN this week.

 

[Learner1]

Thanks! I will follow along with that thread.
I am pretty sure I have some form of dysautonomia. I have what feels like blood pooling in my legs without swelling which compression tights etc helps somewhat with. And I have fasculations all over my body (especially in the legs). I keep the twitching somewhat in check with pacing and magnesium I think. I read on dysautonomia international facebook page that if you have dysautonomia and have muscle twitching you should test for VGKC. And if you test positive IVIG you will likely benefit from it.

I didnt know of those tests you mentioned. I have written those down, thanks! I will see if they test for them at the lab I will be using in Germany.

Edit: I will also test for AA SFN this week.

Can you get IVIG in Germany?

 

[ChookityPop]

Can you get IVIG in Germany?

Im sorry for my bad spelling. I edited the post now. I meant that if you test positive for VGKC there is supposedly a good chance that you will respond to IVIG. I dont know if you can get IVIG in Germany, I dont live there.

But I heard someone on this forum or the discord group talking about that the cheapest place to buy IVIG is in Ukraine. Supposedly possible to buy it without prescription on the pharmacies there, idk if thats true. But I hope someone can share some info on this. I dont remember who it was that said it.

 

[Learner1]

Im sorry for my bad spelling. I edited the post now. I meant that if you test positive for VGKC there is supposedly a good chance that you will respond to IVIG. I dont know if you can get IVIG in Germany, I dont live there.

But I heard someone on this forum or the discord group talking about that the cheapest place to buy IVIG is in Ukraine. Supposedly possible to buy it without prescription on the pharmacies there, idk if thats true. But I hope someone can share some info on this. I dont remember who it was that said it.

Gammaglobulins are a blood product process from many donors. It takes about 9 months to develop the product from the time of donation. I believe the US is the only country that allows donors to be paid, so this contributes to it's rarity in other countries. I know availability varies from country to country, but if I were to buy it from somewhere, I would want to make sure that it was properly processed and screened for infections.

 

[Hoosierfans]

Hey @Learner1

Or a treatment like Rituximab can be used to wipe out B cell production for awhile, to try to teach the immune system not to make the bad antibodies. This is not specific to the type of antibodies and has been used with success in several types of autoummunity. There are other similar drugs that attack different subsets of B cells. Rituximab just does CD20 cells.

Two questions: (1) is there a handy list somewhere of what drugs target / attack which subsets of B cells? And (2) how do you know, as a patient, which subset of B cells you need to go after? Is there testing for the subsets that would show you that levels are a problem, or maybe certain antibodies are produced by certain subsets of B cells?

Just trying to get myself as educated as I can for my upcoming appointments….. 💋