I'd do the B12 first... It is so critical if low. You can always go off HRT anytime.

Okay – so I finally got to see a neurologist yesterday - from others descriptions of problems they had with neuros I was somewhat apprehensive. I decided to take a 'sit back and see' approach rather than launch in with my own research and opinions. Fortunately the doc (resident neuro) was a young guy and one good thing I can say is that he did listen and didn't dismiss my concerns (or most of them) out of hand. However the referring Endocrinologist had only mentioned in her report that I was having problems with loss of function in my left hand – nothing else about PN, nerve pain, cognitive dysfunction, headaches, insomnia, etc. and very little history. I managed to include most of my symptoms in the conversation during examination (reflexes, trigger points etc.) and he did write them down but I suspect I overwhelmed him with the diversity and complexity. At one point he ran off to consult a more senior colleague.

One question I asked was if it was possible for Addison's Disease to cause autoimmune PN – similar to Sjogren's, RA and Guillan Barre. Although the neuro said he'd never seen it (AD is rare) it was probably feasible. So I still don't have a definitive PN diagnosis or cause but it seems autoimmune PN from Addison's Disease may be likely. He said because I had so much going on health wise it would be difficult to determine a specific cause. Hence no further testing (earlier EMG, nerve conduction studies and MRI were negative) but I'm now on the 'books' so to speak. Unfortunately the cognitive symptoms which affect me day to day weren't fully considered – I think he wasn't prepared for a patient with so much going on and because I presented as reasonably lucid he just said he couldn't give any explanation. While I didn't get too many answers I am pleased that at least most of my symptoms and concerns are now on record.

I was offered Gabapentin for pain during flares but turned it down for 2 reasons: 1. I have a history of adverse reactions to several medications and am reluctant to try new ones. 2. my pain is currently mostly bearable and as I'm very limited to what pain relievers I can take that don't interfere with Addison's meds thought it better to save until really needed. For now I'm going to keep monitoring, managing and learning.

To everyone on NT who has followed my journey and given advice, suggestions, support and encouragement a huge THANK YOU. There have been times when, although it may not have been obvious, I really thought I might “fall off the edge” and just having this welcoming place to come to has helped keep me sane and calm.

P.S. MrsD - starting B12 tomorrow

Hi bluesfan,
I had been wondering about your long awaited appointment, so thanks for your update.
Take care there!

Thanks Lara
Yeah - considering it was the public health system I didn't think it went too bad - will wait for the report to my GP to see how much he really listened.

Bluesfan,

A mostly positive day, I would say. But do wait for the report to your GP, which I hope tallies with your experience.

I believe you are following the right course for yourself regarding your meds. Keep a little tucked away in reserve, just in case.

Dave.