Hi there,

My name is Moira and I have a 3 year old little girl with an exceptionally rare disorder, which falls into the HSAN (Hereditary Sensory Autonomic Neuropathies) sector and she is suspected to be one of only 30 people in the world with her particular type of HSAN. It prevents her from feeling most types of pain so she does not know or care when she injures herself, which has led to many horrific issues so far.

However: I am here because for as long as I can remember she has always screamed like she is being tortured if touched by ANY form of heat or cold and - despite numerous questioning sessions from her neurologist (and others in her medical team) - I have yet to find any explanation or reason for this. She is currently showing symptoms of erythromelalgia and while researching this, found that in children it is usually found secondary to other nerve disorders (unsurprising, given her HSAN) ... but also secondary to "small fiber peripheral neuropathy." A term I have never come across before now, in all my researching of her problems.

The initial search brought up the mentioning of symptoms such as the main ones being "heat and cold sensitivity" with other symptoms as found in many other neuropathies. However; this first "article" was from wikipedia with no sources cited and I cannot seem to find any medical article specically mentioning this so far. Most mention SMPF generally and talk about the "burning pain" which she probably does feel, but more as an "itching" sensation - which she has also always felt - but (as is usual for anything related to my daughter) most of the "pain" symptoms are irrelevant to her, as she does not feel those types of pain. They may mention heat and cold, but more in an "insensitivity" criteria in that some people become numb to both like other types of HSAN, which my daughter does not have. She reacts severely to any form of temperature!

Sorry, that was a bit long to get to my question! I basically want to know - from those of you actually suffering from SMPF - is this something widely found? Do some of you feel huge sensitivity to heat and cold (as in it being extremely painful) as well as those who find they are numb to both?

Thanks for any information x

Here is an article which might help you out.

http://www.5minuteconsult.com/5mc/66264

HSAN is considered rare and there are a number of types of it.

• Peripheral Neuropathy
  • http://neurotalk.psychcentral.com/forum20.html

• General Health Conditions and Rare Disorders
  • http://neurotalk.psychcentral.com/forum2.html

• Children's Health
  • http://neurotalk.psychcentral.com/forum9.html

I have small fiber neuropathy and I am on IVIG for it. Usually we are insensitive to heat and cold, we don't feel it as much. I can tell you one day I stood in the bath and one foot/leg felt warm and one felt cool. It was very odd. I do have a lot of articles bookmarked on it if that would be helpful. Let me know.

My hands and feet don't have a lot of feeling. My arms from elbows down and legs from knees down go numb all the time, like they have fallen asleep. Also I lose my balance, and my heart rate and blood pressure are all over the place. It's hard if not impossible for me to have any useful fine motor skills due to the loss of sensation in my fingers. Walking is hard because my feet can't tell their place in space, due to lack of feeling. I'm sorry you are going through this with your daughter.

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are a great number of friends to here to listen and help you out if possible and give you comfort. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene