Ganglionopathy
 

Hi all,

Does anyone know whether full body sfn with symptoms in the face, tongue, nose as well as legs, trunk and spine point more towards a ganglionopathy? I had read somewhere that non length dependant may be suggestive of this. My skin biops results stated that nerve damage was not suggestive of that but I'm still not sure.

Can anyone advise in whether certain blood tests can be taken to determine whether ivig may help you? I'm still not entirely sure on the mechanism of action for ivig and as I'm already on autoimmune disease overload I'd not want to worsen things. My neuro does not offer any advice or suggestions on that question. I'd have to push for the tests.

Any advice would be great. I'm spending alot of energy pushing for access to ivig, although futile right now. Pain hs floored me this week.

Can rapid bowel transit be a sign if autonomic neuropathy? I have heart flutters, dizziness, and lots of tummy spasms often. Gastro test showed rapid bowel transit.

I would say, YES, that full body SFN can point toward ganglionopathy...just as many forms of SFN can point there.

I don't think there is any blood tests to determine whether IVIG will be helpful. If you have documented small fiber damage or decreased density and history of autoimmune disease, then IVIG would be appropriate to try. A 3-6 month course would be enough for you to tell if if would help. Then a repeat skin biopsy would be helpful to gauge any improvement...along with how you feel clincally.

You shouldn't have to "push" for IVIG if you have SFN and autoimmune disease...it should be suggested by your doctor, not you having to push. Maybe another opinion would be best to get you the proper treatment.

Although rapid bowel transit has been known to occur with autonomic neuropathy, the most common is the opposite...lack of motility.

As for the gangionopathy, there is a new MRI/MRN at Johns Hopkins that looks directly at the dorsal root ganglia (DRG). This is how I was diagnosed with gangionopathy (I had noth increased signal and bilateral enlargement of the DRG). I'm not sure (and sort of doubt) if you have this available in the UK, but might be worth asking about, just in case.

Hi,
ganglionic Acetylcholine receptors antibodies is a blood test for Autoimmune autonomic ganglionopathy - .
It can be done at Oxford labs http://www.ouh.nhs.uk/immunology/dia...ntibodies.aspx
"Their presence suggests an immunotherapy-responsive condition - Vernino S. et al., NEJM 2000:343 847-855"

Or as a part of the paraneoplastic evaluation at Mayo http://www.mayomedicallaboratories.c...rpretive/89904

Hi there,

I also have a non-length dependant SFN, i am curious too if this is ganglionopathy. I am not sure if i have A N, have had excess sweating and dizziness. I wonder if it is worth taking this blood test to my next neuro appointment. I too am keen to get IVIG but i understand going through NHS procedure is going to be tricky.

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.

I was diagnosed with SFN in July....I am getting waaaay worse. I don't understand the terms you are using. Is there a dictionary for these terms somewhere? I need help. :wink:

Of course you can Google the terms, but don't hesitate to ask here too. Just let us know which terms you want details on and we'll do our best to help explain things for you.

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 :-)

My neuro suggested IVIG right after I got a positive skin biopsy for SFN. I don't have a specific autoimmune diagnosis and I am still struggling with the HMO to get the IVIG.

If you already have a definite diagnosis of autoimmune disorder it might be easier to justify IVIG without doing more tests.

The bureaucracy took some time, my neuro asked me to fill some forms and they searched for papers supporting IVIG for SFN in autoimmune disorders.

Good luck!

Thankyou for your help and info. :-)