en,

Well heck, given a choice - I'd rather not have a post mortem of the dorsal root ganglia just yet in order to confirm (or not). Think there might be some very good innings left (if nothing else surfaces).

Thanks for all of the very interesting information in your most recent reply.

Sheltiemom

Hi again, en -

Woops - forgot to ask.

You mentioned that you had temporal lobe findings. If you don't mind answering, did you ever have any aphasic episodes? Just wondering, because over the past six (6) years, I've had three very brief episodes of them. Definitely knew exactly what I wanted to say, but the words came out as gibberish. No obvious sign of stroke on brain MRI w/contrast.

Sheltiemom

I also have small vessel ischemic disease & APS (antiphospholipid syndrome) which has caused 3 strokes and numerous TIA's. So I can't say whether any one event might be from something other than the APS & SVID. However, my 'events' were more typical motor loss on one side vs aphasia.

I think (I use this loosely) my temporal lobe dysfunction (found on EEG) is from the Sjogren's inflammation on the brain and contributes to my cognitive problems in general, not 'episodes' of a specific type.

Was the MRI you had immediately after one of these episodes? What about an EEG...have you had one?

Declined an EEG last summer because I was told that something would have to be applied to the scalp in order for the leads to be attached. Was afraid it would irritate the scalp, which was still going through some burning at the time. As that's no longer happening, maybe having an EEG is rethinkable.

Are all of your issues due to Sjogren's?

The EEG is time consuming to apply all the leads (a couple hours), but not too uncomfortable. Taking them off is much faster and I didn't have much irritation afterward. Don't look in the mirror while they're on !! Quite unsightly. Might be an informative test for you with the aphasia.

Just about everything goes back to the Sjogren's. The only thing not directly connected is the APS. It is autoimmune in nature and a small percentage with Sjogren's have it, but I have not been able to find a direct link.

I had a selective spinal nerve root block at T8 and T9 which is near a major autonomic ganglion from what I hear....I got no relief from pain and in fact, I think it made matters worse.

I am holding on with the IVIG and low dose prednisone, but, I am nowhere near normal....not even close. I am still ambulatory and I can still do some manual work, but, interestingly, I can't use my arms much. Arms are much worse for me than legs....then there is the horrible dysautonomia.

Hi everyone-

Sorry to be so ignorant, but what exactly is dorsal root ganglionitis? I suffer from SFN and I know the neurologist has talked about ganglionitis before but I just can't remember and was hoping someone could explain it to me. Thanks very much.

-David