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