Dorsal Root Gangliaonopathy, Anyone???

[Sylvie33]

I had an onslaught of dsyautonomic symptoms beginning this past April, (which are worsening) -- along with really severe depression (which is beginning to lift -- taking light meds). Like many people here, I knew my symptoms were not just "psychological (whatever that means -- given what is common here -- but that is another thread!). My psychiatrist, who is also a neurologist, pressed for more tests, and sure enough, my small-fiber biopsies (thigh and ankle) are both positive (for nerve damage).

The neurologist who did the tests could not disguise his surprise and shock when he called: told me I was only his second case with two positives. (Because I was referred by a shrink, he was sure... oh, you know the story!) Not very reassuring.

I meet with a dysautonomia specialist (Dr. Reimer, here in NYC) on Thursday.

I've been reading as much as I can on the web. Apparently, when two sites are positive it indicates I have sensory neuronopathy (or dorsal root ganglionopathy) as opposed to plain old sensory neuropathy.

Is there anyone here with this diagnosis? I understand it can indicate an underlying auto-immune disorder -- like Sjogrens -- or cancer. Yet I had a toxic reaction to medication last fall (antidepressants) -- I can't imagine this is all coincidental.

I do not have POTS but I do have high blood pressure, shortness of breath, excessive thirst, dry eyes, skin that has basically turned into that of a 90-year-old in 8 months, hair loss, distal neuropathies....and simply disabling fatigue (worst symptom).

Thank you

(Is it weird I feel a sense of cheerful relief that this is "real," and when will I crash???)

Any experiences/advice would be so welcome!

---Sylvie

[dancer65]

Hi sorry to hear you are going through this. I can't comment on the neuropathy but I do know alopecia (hair loss) and sjograns both auto immune are often seen together.

Sorry I can't be of more help but wish you luck