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Small fiber neuronopathy/ganglionopathy

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Old 10-20-2012, 09:29 PM #1
Liz01 Liz01 is offline
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Default Small fiber neuronopathy/ganglionopathy
Hi all

I'm interested in finding out who has same condition as me. Was diagnosed with small fiber neuronopathy/ganglionopathy (not to be confused with small fiber neuropathy), difference is my neuropathy is caused by damage to sensory nerve cells in dorsal root ganglia.

Would be good to hear from others
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Old 10-20-2012, 11:48 PM #2
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Wink Great to meet you!!
Liz,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.


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Old 10-21-2012, 05:43 AM #3
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Default Welcome to Neurotalk.
And I suggest you come on over to our neuropathy forum, if you haven't already--there are a few people there with neuronopathy, and some others (such as myself) who think it may be part of their condition/symptomology:

http://neurotalk.psychcentral.com/forum20.html
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Old 10-21-2012, 06:46 AM #4
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Thanks for your kind words of support. it is a relief that I have found a forum where I can share with others the effects of this debilitating disease.
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Old 10-21-2012, 08:41 AM #5
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Originally Posted by Liz01 View Post
Thanks for your kind words of support. it is a relief that I have found a forum where I can share with others the effects of this debilitating disease.
Hi Liz01 I also have a neuronopathy condition which affects sensory and autonomic nerves, I also live in Scotland it would be good if you stayed near me as I have not found anyone here with this condition, if you want to PM me I would be happy to phone you once we got to know one another............ Marie
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Old 10-21-2012, 09:17 AM #6
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Hi Marie

I am so happy that you've replied. I haven't met anyone with same condition so it would be great to discuss effects and benefits of ivig - how do I PM you as I don't want to post names of hosp etc on public forum - do you go to SG hosp for Ivig?




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Originally Posted by villier View Post
Hi Liz01 I also have a neuronopathy condition which affects sensory and autonomic nerves, I also live in Scotland it would be good if you stayed near me as I have not found anyone here with this condition, if you want to PM me I would be happy to phone you once we got to know one another............ Marie
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Old 10-21-2012, 10:10 AM #7
Liz01 Liz01 is offline
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Hi Marie

I sent a PM but don't know if you got it ok. It's difficult to cope with this invisible condition - folk think you look healthy but inside you're screaming with the pain of the neuropathy. Does weather conditions/atmosphere affect you?


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Hi Liz01 I also have a neuronopathy condition which affects sensory and autonomic nerves, I also live in Scotland it would be good if you stayed near me as I have not found anyone here with this condition, if you want to PM me I would be happy to phone you once we got to know one another............ Marie
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Old 10-22-2012, 08:25 PM #8
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Smile Hi Liz!
Welcome!

You've come to a very friendly and caring place!
Make yourself right at home. This is a down-to-earth easy atmosphere.

It's great to have you!

Rae
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Old 10-23-2012, 04:57 PM #9
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Thanks Rae

Every day is a challenge for me as I'm sure it is for many others too. It is a comfort to know that others understand.

Thanks
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Old 10-23-2012, 07:55 PM #10
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Quote:
Originally Posted by Liz01 View Post
Hi all

I'm interested in finding out who has same condition as me. Was diagnosed with small fiber neuronopathy/ganglionopathy (not to be confused with small fiber neuropathy), difference is my neuropathy is caused by damage to sensory nerve cells in dorsal root ganglia.

Would be good to hear from others
Hi there. Welcome to Neurotalk.

I'm happy you have made a buddy on this forum. I hope you two have figured out a way to pm each other and can actually meet up.

Hope you are feeling a bit better.

Melody
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