Hi Mat

Thanks for the update. Understand the complicated process you are going through . . . and the frustration with making yourself understood.

Like you I'm allergic to several medications - Paradex, Amitryptiline, Voltaren (Diclofenac) and many others interfere with the efficacy of the corticosteroids I take for Addison's (adrenal insufficiency), and can't be taken. I have chronic pain from osteoarthritis and peripheral neuropathy and now it looks like bulging discs in my lumbar spine may be responsible for some of the painful nerve issues (MRI yesterday). The neurologist & rheumatologist want me to try Gabapentin (Neurontin) for the neuropathy. I'm hesitant given my previous reactions, the numerous documented side effects, and the fact that anti-convulsants are known cortisol suppressants ie: I would have to increase the steroids. Also with a family prevalence of epilepsy (but not me - so far) I'm concerned that starting something like Gabapentin may induce epilepsy, if I had to go off it for some reason. When I discuss the concerns (that is if I'm given the time) the doctors just state their patients seem to tolerate it well. I've done further research on Gabapentin and from what I've read it doesn't seem to be effective for inflammatory pain (eg arthritis - nor is it usually prescribed for this). Sorry to have diverted this post onto a discussion on Gabapentin - but the issues of seeking optimal treatment are similar.

In regard to your being prescribed IVIG it might be that the expensive cost is a major hindrance under the public health system. There are very restrictive guidelines here in NZ for that reason. Here's a link to the NHS Scotland guidelines:

http://www.piduk.org/static/media/up..._march2012.pdf

I searched: "Scotland prerequisites for prescribing IVIG" to find these - there are also other interesting articles.

Keep persevering; the appointment went as well as could be expected given that you now have a new/confirmed diagnosis - think of it as finally getting you and the doctor reading from the same book - she now has to just catch up to you and read from the same page . . . hopefully

All the best for the nerve conduction studies - have you had these done earlier? If so a change could confirm the progressive nature of the PN. However it's not unusual for NCV to give inconclusive or false negative results in some cases.