Ok on Monday I had my follow-up appointment with the second neurologist.
As I had shown ANNA antibodies in a previous test the neuro ordered an ENA (Extractable Nuclear Antibodies) test which was negative - so no autoimmune issues are present - great! I am very happy about that.
I did a GTT which showed a significant dip (lower reading) at the one hour mark and by the two hour reading the level was basically the same as the baseline fasting level. Unfortunately I don't know what the trend would have been at the three or four hour mark as it was only a two hour GTT. At the bottom of the test result page it said: "
A 'flat' curve is occasionally seen due to thyroid, pituitary or adrenal insufficiency, malabsorption or rejection of the glucose dose". As I am on treatment for thyroid and adrenal insufficiency I should not be technically deficient in those areas. So it is a bit confusing!
ACE (angiotensin converting enzyme) test was normal as was the urinary porphyrin and porphobilinogen screen. Likewise the test for Coeliac disease was negative. A very slight change in one parameter on the SPEP - not considered significant.
Autonomic tests were normal.
I guess the most disappointing thing was that the neuro's conclusion is I do not have SFN as the QST's were normal.
As I have said before and to every doctor that I have spoken to about these symptoms, I have told them that I only have an
extremely mild amount of burning in my feet but once it hits the ankles and lower legs (& other parts of the body) then the burning/prickling is much stronger. Basically his inference is that it is impossible for that to happen because of the principle of the long nerve fibres affecting the feet first - which I know is true. So it is very confusing.
He did say that a skin punch biopsy could be helpful in this instance - so I don't think he totally disbelieves me. Unfortunately there is no established protocols or labs in Australia yet for doing these punch skin biopsies although he did say that a PhD student has just done a series for her dissertation but is now finished.
So I am now no closer to a diagnosis although quite a few other conditions have been ruled out, which is good. Don't know where to go from here - just live with all the symptoms and see if something else develops I suppose.
Thanks for the support I have received from many of you!