Was just wondering if dorsal root nerve block might have any effect on dorsal root ganglionitis/small fiber neuropathy- both length-dependent and non length-dependent.

Sheltiemom

It's an excellent question. I wondered this myself after being confirmed by special MRI with dorsal root ganglionitis secondary to the Sjogren's. My neuro at Hopkins said there was NO effective treatment to date for this type of attack from Sjogren's. However, he said the dorsal root nerve block could be tried, just to see if it helped eliminate some of the pain. Until I see more evidence, I think I'm passing. Just the idea of messing with the dorsal root ganglia when there is known enlargement/inflammation makes me uneasy.

However, since you brought the topic up, I shall be watching this thread carefully to see what others have to say.

Agree with you, en bloc, about not wanting to mess with the dorsal root ganglia until more of the jury comes in - and to not to mention the shingles/post-herpetic neuropaty attack of 2003. As we know, that dormant (post-chicken pox) virus emanates from the dorsal root ganglia.

Interesting that your neuro connected your neuropathy attack to the Sjogren's. My neurologist at Cleveland Clinic who had done the skin punch biopsies confirming NLD SFN called it "idiopathic," although she knew I'd been Dx'd with Sjogren's and the very abstract she'd authored mentioned Sjogren's as a cause.

Sheltiemom

Ganglionitis or ganglioneuritis (as some call it) has a direct connection/relation to Sjogren's but is usually not confirmed until a post mortem exam of the ganglia.

However Hopkins has a new MRI protocol to look at the dorsal root ganglia, which has proved very helpful in my case (for answers). My neuro/rhuemy at JH is an academic and researcher (very few patients clinically). He also believes that once the ganglia is attacked, it's not limited to the dorsal root and would likely include the autonomic ganglia and brain...which is consist with the Sjogren's disease process. These are both right in line with my symptoms of severe autonomic dysfunction, temporal lobe dysfunction and cognitive difficulties. Therefore, I don't even think a DRG block would accomplish much because I think other ganglia are still involved.

Sadly, this MRI (w/DRG protocol) is not available in most (even large) institutions. You might want to check at the Cleveland Clinic though.

I am thinking of trying another 3 month course of IV steroids (1gm/day x 3-5 days each month). The idea being to assess my, ataxia, reflexes, proprioception, sensory, pain levels, etc (all problem areas), then do so again after the 3 months to assess any changes consistent with reduction of inflammation.

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.