I totally empathise with your difficulties. We found one great doctor who was more up to date with the B12 issues but she advised my daughter that she was going away on maternity leave and that the other doctors in the practice would not agree with her recommendations regarding supplementing B12. Needless to say she left, we then moved and now we're in a similar situation as you are.

As I see it there are a couple of different ways to go ahead and I'll post what I think is the logical way for us (daughter and self) in a similar situation ...

We will go ahead with the genetic testing out of the USA. Considering the relatively low price of under $100 USD, it is much less expensive than seeing a Psychiatrist for $350 for 45minutes which is where we may all end up if no one starts to take us seriously.

Once you have that information then you are ahead already. Then you need to interpret the data and you can find that information with help here I'm sure.

My seriously real problem with getting the genetic testing done overseas is that I'm very wary of the gathering of health and genetic data by other countries.

In the meantime we will keep supplementing with the B12. I'm not sure how many free blood tests you can get over there per year, but we can only get 3 for vitamin type levels per year so my daughter tells me.

We're looking for the same information as you are as you know, so I just wanted to tell you that you're not alone and it will all work out in the end, but in reality it needs to be sooner than later.

btw I think your medical practice needs to upgrade their security online.

take care.

All the best to you for your appointment. I hope you get some answers.

I just was thinking about you and all the problems you've had trying to get doctors to listen to you and I remembered this thread and our previous discussions. Something I just read in the Health News Headlines here made me want to post it to you. (still half asleep so excuse grammar)

http://news.yahoo.com/factbox-compan...--finance.html
Factbox: How companies are mining patient DNA, data for drugs

edited to add: I should have said "in" other countries, not "by" other countries, but the drift is the same.

I think you should get your copper run. When people take high dose zinc, copper may fall. They tend to compliment each other.

Some zinc supplements have copper in them, so look at your label of the product you used or look it up.

Males tend to lose zinc daily...as it is secreted in semen. Women lose Iron, and men tend to lose zinc. So your taking it so long is very odd and unnecessary unless you use GERD medications daily or an ACE inhibitor for blood pressure. These two drug families deplete zinc. This is why oysters are suggested for men as an aphrodesiac .... they are very high in zinc.

Most zinc supplements are harsh and cause digestive upsets. Zinc sulfate especially. Zinc is used in nursing homes to help heal skin bedsores, at very high doses.... 220mg...a day.

I think you should get your testing done, copper level and a zinc/copper ratio.

Thanks Lara & MrsD for your concern.

I did get copper done, along with zinc, (but not zinc/copper ratio) - I asked my GP for the Zinc test but she refused to order it giving me the excuse that she thought it was a test she wasn't authorized to order. I think we both knew that wasn't the case but I didn't push it. She was probably somewhat embarrassed because she was the one who had prescribed the zinc, was supposed to be monitoring me and didn't know it could be toxic until I told her! We had actually twice reviewed my continuing the zinc during the 2.5 yrs and not once did she suggest stopping it. Her knowledge of Addison's is minimal and I'm guessing she thought my depleted immune system needed it.

I had the tests done privately (yet again!), but unfortunately not until 5 days after stopping the zinc as I was pretty unwell and not thinking too clearly. Both tests came back within the normal range. I don't know if the 5 day wait was too long and the levels had stabilized and therefore any excess or deficiency was corrected. So I really only have the symptoms (and subsequent improvements) to go by.

I spoke to the pharmacist about it and she only had even a vague knowledge of possible toxicity but did agree that the warnings on both the labeling and the data safety sheet on medsafe (NZ Govt. drug info website) were inadequate. That's the complaint route I'm going down to follow up. Unfortunately without supporting clinical evidence (ie: lab results) filing an Adverse Events report would be a wasted effort.

MrsD - I still intend to supplement with B12 to get my numbers back up to your recommended levels but I'm doing the "change 1 thing at a time and observe" routine. I also have another big change I need to make within the next few months - stopping HRT (tapering). What would you recommend the minimum time I would need between starting B12 and then reducing HRT? - I really need to do this over our winter - summer is too hot (ie next few months) Many thanks for any suggestions.

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!