Originally Posted by en bloc

Sorry Joanna for the delay.

I thought maybe I have some information that may be helpful to you. I have an autoimmune condition called Sjogren's, which has also attacked and caused damage to the dorsal root ganglia, evidenced by special MRI/MRN done at Johns Hopkins. This scan is done with a special protocol (called DRG protocol, for dorsal root ganglia) to look specifically at the dorsal root ganglia. It was still considered experimental when I had this done in 2011, but in my case they could definitively see enlargement and increased signal (bilaterally) of the dorsal root ganglia, which is consistent with ganglionitis.

Although this test may have given us confirmation of what we suspected in regards to the cause of my PN, it didn't proved us with any useful treatment options...since the damage consistent from Sjogren's is typically only treatable if caught with the first year of onset...and sometimes, not even that long, according to my neurologist/rheumatologist (he is BOTH specialties that focuses on the neurological complications of rheumatic disease---only one in the country to be both specialties).

So, yes, for me it was worth 'exploring' the SFN/PN damage back to the ganglia (just because I wanted the confirmation), but it doesn't always mean that it will open the door for options of treatment. That being said, I don't know whether it would make a difference for a patient with AS vs Sjogren's. But all depending on where you live and your ability to travel to Hopkins, it might be worth while for you to consider contacting the neurologist dept and see if this test is available for this purpose (mine was done in early 2011, so it may be more widely used).

Damage at the dorsal root doesn't usually have very optimistic recovery options, but it can't hurt to discuss this with a neurologist that would know more about the link with AS and SFN.

As for Humira, I have heard the same as others here mentioned about its link to neuropathy. I have just recently been Dx with what they know is an inflammatory arthritis (they believe is psoriatic arthritis), and of course the treatment that would be considered, is Humira. I'm not sure i'm interested in possibly increasing my neuropathy problems with this medication...not to mention I am immune deficient and this is an immune suppressor (so I may not even be considered to receive this).

Just thought you might want to know that exploration ganglion damage is possible, but it might not give you any useful or positive outcomes in regards to treatments. but Johns Hopkins is place to go if you are interested in pursuing it.

Hope this is helpful.