I need some help trying to find a Doctor to help me, I'm in Huntsville Alabama and I cant fine one. Can anyone offer any information please, my daughter has the same thing and we both are very bad right now and my family doctor has no Idea either , Thanks
Dear Christina,
Unforrunately there are times when your doctor has to be informed by you! My doctor finally sent me to the Mayo Clinic. That took me 2 years to get in. If you could find a doctor who would research this it would be wonderful. Being a doctor he would have access to somebody at the Mayo who could advise.
I know the usual drug of choice is Neurontin/ Gabapentin. I have been on it for 8 years. It has lliterally saved my life from the pain. There are more tips. I have had it for 15 years and it is debilitating. I wouod be glad to talk with you.
Dear Christina,
So sorry to hear both you and your daughter are suffering with EM. Our directory has no names for Huntsville AL. EM aware physicians are few/far between. You would have to travel to see the 3 that we have- do you want the names?.
Wishing you both a comfortable evening.
God bless
Dear friend,
Just saw you said you have 15 years of EM tips( bless you, bless you! ). Would you mind sharing those tips with us? Moderator team are trying so hard to raise awareness, get some information tips together in order to help fellow sufferers. Your information and experience would be invaluable. It can be just rough point form- you can send to us if you prefer- or write a post . I can then add to the list we have to help us produce a great fact sheet for our EM community toolbox.
Of course- when /if you are up to doing so. But it would be an amazing help to everyone.
Your story makes me so very sad Grandma4. I truly hope you are comfortable today.
Thinking of you. You are in my prayers.
God bless
Biggest hug
x
Grandma4 said:
Dear Christina,
Unforrunately there are times when your doctor has to be informed by you! My doctor finally sent me to the Mayo Clinic. That took me 2 years to get in. If you could find a doctor who would research this it would be wonderful. Being a doctor he would have access to somebody at the Mayo who could advise.
I know the usual drug of choice is Neurontin/ Gabapentin. I have been on it for 8 years. It has lliterally saved my life from the pain. There are more tips. I have had it for 15 years and it is debilitating. I wouod be glad to talk with you.
Christina, It sounds like you and your daughter could have the inherited genetic mutation of the Nav1.7 sodium channel. Otherwise it would be pretty surprising for both of you to have it. There's information on this site, on the TEA (The Erythromelalgia Association) site, and the internet in general about that form. And studies are being done to develop meds especially for the inherited form. Good Luck
Hi Christina,
Apart from the Dr's we sent you , nothing yet in Huntsville. We will keep our ear to the ground. Hope you and your daughter are 'comfortable'.
Big hug
mads x
I see this is an old conversation, but I’m in the Huntsville area. Nashville, TN is not that long a drive that I couldn’t go there. Any suggestions for EM doctors (dermatologist, neurologist, etc.) in that area please?
Leslie