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#1 | ||
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Junior Member
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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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"Thanks for this!" says: | wishuloveb (07-18-2013) |
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#2 | |||
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Legendary
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Liz,
![]() Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. ![]() ![]()
__________________
. "Life without God is like an unsharpened pencil -- it has no point.
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"Thanks for this!" says: | wishuloveb (07-18-2013) |
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#3 | ||
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Magnate
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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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"Thanks for this!" says: | MelodyL (10-23-2012), wishuloveb (07-18-2013) |
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#4 | ||
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Junior Member
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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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"Thanks for this!" says: | wishuloveb (07-18-2013) |
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#5 | ||
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Junior Member
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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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"Thanks for this!" says: | (Broken Wings) (04-13-2013), wishuloveb (07-18-2013) |
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#6 | ||
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Junior Member
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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? Quote:
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"Thanks for this!" says: | (Broken Wings) (04-13-2013), wishuloveb (07-18-2013) |
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#7 | ||
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Junior Member
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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? ![]() Quote:
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"Thanks for this!" says: | (Broken Wings) (04-13-2013), wishuloveb (07-18-2013) |
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#8 | |||
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Grand Magnate
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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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"Thanks for this!" says: | (Broken Wings) (04-13-2013), wishuloveb (07-18-2013) |
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#9 | ||
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Junior Member
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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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"Thanks for this!" says: |
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#10 | |||
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Wise Elder
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Quote:
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
__________________
. CONSUMER REPORTER SPROUT-LADY . |
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"Thanks for this!" says: | (Broken Wings) (04-13-2013), wishuloveb (07-18-2013) |
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