Quote:
Originally Posted by en bloc
Keep in mind that AAG (autoimmmune autonomic ganglionopathy) is NOT the only type of ganglionopathy. You can have damage to the dorsal root ganglia and not have damage to the autonomic ganglia. This blood test is just for one type of ganglionopathy...but an important one if you have dysautonomia.
The test itself won't determine if IVIG will help. It is a diagnostic lab to determine the ganglionopathy. It is still unknown whether the IVIG will help (until you try it), but it is one of the conditions that IVIG has had good results.
They are still not even sure WHY the IVIG helps many people with different types of neuropathy...they don't know the exact mechanism of action. They have ideas how and why it works, but it's not defined just yet.
I personally, have had good results with IVIG for my ganglionopathy...but only certain symptoms. Most of my damage is permanent.
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Thank you en bloc and still hoping :-) No one has ever willingly mentioned ivig, it is only after my own research and then presenting it to them has it been discussed. My neuro specialises in peripheral neuropathy. It must be cost.
Phoned secretary anyway and she said the neuro is collating info for the application. It could take a bit of time though. Knowing the NHS that's not a good comment to hear. I don't know exactly what else he needs to collate.
Sadly as its the NHS it could be 6 months before I see another neuro and then I have to navigate and negotiate with them. My neuro sits on the ivig panel wherein the decision is made so I feel I need to stick with him. The NHS is a wonderful thing but presents a vast number of challenges for some patients as well.
The blood tests look interesting thanks still hoping. I'm looking more into the Oxford labs one.
I don't believe tjy do the MRI here in the UK. My rheumatic said that a basic MRI if my spine would have shown it, that's not true at all is it. Other than that no one has a clue what I'm talking about. We are clearly behind the US in this one.
Thanks again everyone for the detailed replies :-)