Thanks madisongrrl
Thanks for the info. I saw her video - 'Minding your Mitochondria' - how she treated her own MS. Lots of useful ideas.

http://www.wimp.com/mindingmitochondria/

Just a FYI but I shared this with my PCP and he loved it!! He was the one that taught me the "hoof beats" maxim.

It's been over a month since I first posted this thread – it seems like it's been a month of waiting for one test result after another. The IFA, PCA, and Coeliac screen all came back negative.

I did get an Endo appointment (April 20) but it was less than useful. It was the 3rd endocrinologist in two years and in spite of the other 2 both being in clinic I was ushered into the head of dept. I may have officially become a 'difficult' patient and was relegated to him to 'sort me out'. He doesn't do computers, doesn't believe in supplements, all he wanted to know about was my Addison's history – can't he read a file!

In frustration immediately after the appt. I went and had Homosysteine and Methylmalonic Acid tests done privately. From what I've read these tests are more definitive than serum tests for B12 (and other) deficiencies. Results both in the low/mid of normal range (high is bad). My conclusion is that I don't have clinical B12 deficiency or a malabsorption problem.

Just to throw another spanner in the works it seems I may have had zinc poisoning. A case of too much of a good thing. Back in Nov 2012 I was prescribed Elemental Zinc 50 mg daily for wound and bruise healing (not happening due to Addison's disease). It worked as intended but what I wasn't told is that the dose was above recommended maximum daily levels (40mg for adults) and that it shouldn't be used for long periods. Note: it is a prescription medication and the dose is indicated for medical treatment. I discussed it with my GP who told me to stop taking it immediately. That was 12 days ago - some (but not all) of the more recent symptoms have improved in the past 3 days – brain is clearer (can't you tell? ), less headaches, stomach pain, diarrhea, insomnia etc.

Why the warnings weren't there and why I was taking it for so long with inadequate monitoring is too long a story for here but suffice to say I'm following up with the relevant authorities.

For anyone taking zinc or considering it please be aware it can be toxic. Also it is the amount of Elemental Zinc that is important. If a label doesn't define this don't buy it. The best site I found for info is:

http://ods.od.nih.gov/factsheets/Zin...ofessional/#h2

It was a random post from another person on NT that alerted me to the possibility that zinc might be a part of my problem so thanks again to all on this great site.

So where does this leave me? The PN is unchanged but I finally have a neurologist appt. - next week. Having done half his work for him I bet he takes the easy way out and I get labeled idiopathic. More screams of frustration expected! Stay tuned.

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!

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.