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lamp_girl

IVIG in the UK?

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No, but (health board funding dependent as I live in Scotland) I will be going back to the autonomic unit at UCLH in the next few months for relevant POTS autoantibody tests. I asked about IVIG, they don't use it but wait for it... if positive they may offer PLASMAPHERESIS which is safer, probably more effective, & often requires placement of a central line so you would be much likelier to be able to get additional IV saline!!! Not getting my hopes up because I have EDS & no sign of any autoimmune disease, but I was blown away at the thought of accessing this in the UK!

B x

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On 12/15/2018 at 9:59 AM, bombsh3ll said:

No, but (health board funding dependent as I live in Scotland) I will be going back to the autonomic unit at UCLH in the next few months for relevant POTS autoantibody tests. I asked about IVIG, they don't use it but wait for it... if positive they may offer PLASMAPHERESIS which is safer, probably more effective, & often requires placement of a central line so you would be much likelier to be able to get additional IV saline!!! Not getting my hopes up because I have EDS & no sign of any autoimmune disease, but I was blown away at the thought of accessing this in the UK!

B x

Heh, I got referred by Prof Mathias to Dr Iodice at UCLH but got a different doctor on my appointment and didn't get that far tbh. Just the usual stuff and wanted to do repeat testing, I wasn't convinced by him.

He said with the POTS antibodies they don't know enough and won't risk IVIG or Plasmapheresis etc.

Please can you tell me who you saw that mentioned testing for POTS antibodies and which tests they will be? I didn't know they did the specific ones in the UK and this guy didn't seem to mention them either!

One thing I want to get tested for is Sjogrens, I mean I don't have big symptoms, but I do get a dryish mouth often not terrible but always get a thirsty feeling, but that could just be pots. I don't hardly sweat in many areas either! Any idea who I need to see to get tested for this? GP is useless. lol.

Thanks! :)

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