Dorsal root ganglionopathy

[CatyJ]

I have been diagnosed with dorsal root ganlionopathy - most likely caused by an autoimmune condition, but all tests have come back negative.

My sensory nerves are primarily affected, but it is also affecting my autonomic nerves too.

I have been unable to find organisations who provide support and information for people with my condition.

Any advice or information you could share about this condition would be appreciated.

Thanks!

[James_BSF]

Hi CatyJ,

Thanks so much for using this space to talk about your condition.

Our organisation (Brain & Spine Foundation) is not specific for dorsal root ganglionopathy but we are pan-neuro, meaning we provide support and information on the full range of neurological conditions, including referring to other organisations that can help.

We have a Helpline led by neuroscience nurses with trained officers. Please do get in touch:

Telephone: [phone]

Email: [e-mail]

For more information about what support our Helpline can offer: healthunlocked.com/brain-sp...

Best wishes,

Aaron

[Evertired]

I have recently been diagnosed with Dorsal Root Ganglionopathy.

I hope you are still around to get this message.

Thank you for the above post, I have spoken to a lovely lady at the Brain and Spine Foundation.

But I really want to find some people who have this condition to talk too.

[CatyJ in reply to Evertired]

Hi - yes, still around - you are the first person I have spoken to with the same condition! Good to hear from you.

[Evertired in reply to CatyJ]

How are you ?

Are you having any treatment ?

Are your symptoms stable ?

I can barely walk atm but I start iv Steroids on Thursdays, starting this week. Hoping for the 10 to 20% improvement that my consultant said I might get. But will settle for not getting any worse.

I am in North West of England where are you.

You can't believe how many forums I have looked for someone else with this condition. I am so pleased to find you

[JANvbb]

Was diagnosed 2 years ago with dorsal root ganglionopathy with sicca symptoms. I hope you are all OK..... I have good days and bad..... Its a real battle isn't it. I'm in the North West x

[CatyJ in reply to JANvbb]

Hi - similar to you, ups and downs. In the North West too x

[ABridge]

are you still on the forum I have it too, diagnosed 14 years ago and it’s been a daily battle since.