Idiopathic neuropathy - support groups?
 

Does anyone know of any support networks in Australia for idiopathic neuropathy? I'm 28 female and have been suffering from severe neuro pain for 6mths now without answers. All my specialists have given up on me, and, I've now been told neurontin and the pain management clinic is my only hope. My family have lost interest / sick of hearing about it, and I'm now after some contact with people who might know what I'm going through in my search for answers.

Google: neuropathy support groups australia

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Doc

Hey
 

I understand how you feel. I also have unexplained neuropathy and have had many tests and been to a lot of doctors!! It can be very frustrating. You will find a lot of information on this forum. I've been finding that a lot of neuropathies are a result of a reaction to certain antibiotics or low vitamin levels. I am glad to have all of this information from people with experience so that I know what tests to ask for and possible what remedies I can try.:)

I completely understand your frustration. My first neurologist diagnosed me of idiopathic neuropathy on my first visit without even giving me diagnostic tests and prescription. I am now on my 5th month of suffering the pain in both feet/legs, patchy numbness, deep and stabbing pins and needles in my legs and arms. I am on Gabapentin 1200 mg/day.

I know it could be overwhelming and scary at times, knowing that our disease has no cure. I have been through, and still is, difficult moments dealing with the pain. I think what is most scary, in my experience, is the prospect of feeling in pain - everyday - for the rest of our lives. BUT, there is ALWAYS HOPE. And this forum has become my hope. You will find here vast of knowledge and information about our disease that we could not get from our doctors. I suggest you read the thread on "Liza's neuropathy improves...". It will give you hope that our condition can improve.

I am now currently taking the supplements listed in Mrs.D's thread about supplements. You need to read about the list of supplements that can help our nerves heal. For 3 weeks now, I have not experienced burning in my skin. I still feel the dreaded pins and needles, electric shots in my feet, fatigue but not the burning. I am sooo happy about it and I have this forum to thank for.

Hang on there....