[Aussie51]

Hi to all,

I am a new member with recently diagnosed neuropathy in my feet. They are constantly burning with occasional shooting pains through the big toe and first toe. Four months ago, I was able to walk several km; now it is a struggle to walk 50 metres without significant pain. I am extremely worried about the rapid deterioration of my condition.

At this stage I am in the middle stages of diagnosis but find the process frustratingly slow and lacking any certainty. My GP is excellent, but the specialist neurologist appears disinterested.

Are there are any forum members' in Australia, who are able to recommend a knowledgeable neurologist experienced in this field, who can give some guidance. I am in Western Australia, but such in my desperation, I would be willing consult by Skype or teleconferencing. Maybe even travel to the other side of the country for a face to face consultation with the right specialist.

Through my local GP, I have had tests for diabetes, iron levels, Liver function, Red & white cells and platelets, vitamin C, vitamin D, Vitamin B12, C Peptide, and Insulin levels. All appear relatively normal. A lower spinal MRI has been done. The latest test is an EMG by a specialist neurologist who simply stated "you've tested positive to neuropathy, I will contact you again in a few days". Over a week later, plus 2 emails sent requesting further advice, there has been no reply. Why??

There must be specialist neurologists in Australia who are experienced in this field. Can anyone help?

As a point of interest, my vitamin B12 level was 368 pg/mL. In Australia, less than 150 is classed as "Deficient", 200 - 1000 is classed as "Normal". But I noticed this forum's moderator mrsD has stated in another thread that the current acceptable level is 400 pg/ml.

Very, very frustrating!!

Thanks

[Aussie99]

Originally Posted by Aussie51

Hi to all,

I am a new member with recently diagnosed neuropathy in my feet. They are constantly burning with occasional shooting pains through the big toe and first toe. Four months ago, I was able to walk several km; now it is a struggle to walk 50 metres without significant pain. I am extremely worried about the rapid deterioration of my condition.

At this stage I am in the middle stages of diagnosis but find the process frustratingly slow and lacking any certainty. My GP is excellent, but the specialist neurologist appears disinterested.

Are there are any forum members' in Australia, who are able to recommend a knowledgeable neurologist experienced in this field, who can give some guidance. I am in Western Australia, but such in my desperation, I would be willing consult by Skype or teleconferencing. Maybe even travel to the other side of the country for a face to face consultation with the right specialist.

Through my local GP, I have had tests for diabetes, iron levels, Liver function, Red & white cells and platelets, vitamin C, vitamin D, Vitamin B12, C Peptide, and Insulin levels. All appear relatively normal. A lower spinal MRI has been done. The latest test is an EMG by a specialist neurologist who simply stated "you've tested positive to neuropathy, I will contact you again in a few days". Over a week later, plus 2 emails sent requesting further advice, there has been no reply. Why??

There must be specialist neurologists in Australia who are experienced in this field. Can anyone help?

As a point of interest, my vitamin B12 level was 368 pg/mL. In Australia, less than 150 is classed as "Deficient", 200 - 1000 is classed as "Normal". But I noticed this forum's moderator mrsD has stated in another thread that the current acceptable level is 400 pg/ml.

Very, very frustrating!!

Thanks

G'Day and sorry to hear about your feet. I had seen 2 neuros myself before I found my current neuro. Contact RPA hospital in Sydney. In their neuro sciences centre they specialise in autonomic studies and neuropathy. Although they work on more complex cases and frequently consult with Mayo Clinic in America. I would hate to see you having to travel cross country as I think that any good doctor would want to examine you. I am not familiar with Perth but do you have any big teaching hospitals you can call? Maybe they too have neurosciences units with better neuros or ones that are at least more caring.

Aussie

[Electron]

One reason he may seem disinterested is that he does not know how to help you. He is probably somewhat frustrated as well, although not as much as you are. This is a frustrating illness, so welcome to the club, I guess. You have found a good forum.

If you have any doubt about your B12 level, we normally say you can safely take 1000 mcg per day methylcobalamin, and it's fairly inexpensive. Some people take 5000 mcg per day.
Ron

[Aussie51]

Thanks Aussie99 and Electron - yes I am beginning to understand this is a very unusual and complicated illness.

Aussie99, I will try to contact RPA in Sydney to see if they are willing to give me any suggestions as who to contact in Western Australia. At this stage its a bit of a lottery trying to find the right person who you know has the knowledge of neuropathy to give some meaningful guidance.

To me finding the underlying cause of the illness, and then attempting to take steps to halt its progression is my current goal. Can only give it a red hot go.

What a wonderful forum this is, with so many people contributing their experiences and making meaningful suggestions. What has worked for them may work for others. Its worth a try.

Thanks

Aussie 51