Did you get the blood tests--methylmalonic acid and homocysteine, and THEN start the B12? Please update us.

Thanks Liza Jane for the follow-up. No I haven't had it done yet. MMA is not a standard lab done in Australia for B12 deficiency. I have found a genetics service lab who do it but I will have to pay for all the tests and transport of sample, as it is not covered by our medicare system, so it will be expensive.

On Wednesday this week I will be seeing my neurologist. My plan is to listen to her and look at the results of all the tests done so far. See if there is another obvious cause for the PN and if not, (especially she wants to label me 'idiopathic') I have a couple of things I will tell her I am not happy about (one definitely being the B12) so I will ask her for the pathology request form for the extra B12 test, MMA and homocysteine to be done.

If she refuses or thinks it is unecessary I have a couple of other doctors who I've researched who I know will order them for me. I know it is a bit drawn out this way but I do not want to start on high doses of Vit B12 without having further testing, as it makes it difficult in the future for ongoing treatment and medication cover/subsidies.

I am still feeling very unwell along with all the parasthesias and gastric discomfort - so I'm looking forward to Wednesday in the hope I can start to get to the bottom of all this......but rest assured I will be upping my B12 intake significantly one way or another even if there is another explanation for the PN.

I get from your post that you already are taking B12. How much and for how long?

This is an important answer, because it could mean that your expensive MMA test will be useless.

rose

Hi Megan,

I thought I'd throw my two bobs worth in here.

I have CIDP and it took 8 months to receive a definitive diagnosis (Given that I live in the sticks, this is in no way surprising!). I also had other unforseeable anomolies which threw a spanner in the works, but that's another story.

A lumbar puncture is a common diagnostic tool in this case and as others have said, it will rule out a few things.

I know you'll receive alot of great advice here.

Just out of curiosity, Whereabouts are you in OZ?
There are a few Aussies here, myself included and depending where you are in the country, we may be helpful with docs etc..

I don't post often but a pm will always get to me.

All the best
Noong

No I have not started the B12 yet. I want to have the tests done first, if at all possible and very soon.

I will be tackling all this with my neuro tomorrow. If my results indicate another cause for the PN then I will purchase some Methyl B12 and boost my levels regardless.

I have sent a pm to you. Thanks!

Megan,

Good

rose