I was recently diagnosed with B12 deficiency and folate deficiency, which together my doctor called pernicious anaemia. I have been treated for this with 3 one-a-week injections to 'load' the B12 and am now about to be tested to check levels before going onto 3-monthly injections. Posting here about it led to people telling me that it can also be treated with daily oral medication. And they filled me in on some details of this. I believe the tablets are somewhat more expensive than injections which are as cheap as chips.

My doctor (GP) asked me if there were any connections to PD meds or PD itself.

Imagine my surprise when I found a world of people out there having very much the same problems as PwP have. A 'one size fits all' theory of deficiency, and doctors who do not listen. A struggle to get treatment. Lives that are messed around by a lot of fatiguing symptoms, and a whole load of neurological damage too. There is a forum and society trying to put this on the map, called the Pernicious Anaemia Society. And hundreds of people are posting there..........

To try and answer my doctors question, I looked at two questions.
1. Was there a connection between l-dopa usage and B12/folate deficiency?
2. Was there a connection to PD itself?

I did a small very subjective exercise to see if there were possibly others like me on our forum, here at Neurotalk. Out of around 15 people 4 had some experience of either B12 def. or folate deficiency or PA. That was high enough for me to want to look further.

I found a study done by neurologists at Athens Uni., Greece, that indicated that B12 and folate levels were lowered in long term PwP. I took it to my Doctor who pretty much waved it away when he saw where it was done This study made interesting correlations between these deficiencies in PwP and late stage symptoms such as dementia and cognitive loss.

I also found on the NWPF site, an article by Katherine Holden (dietician who specifically writes on diet and PD) about low levels in PD patients, citing other articles that indicated that people using l-dopa were more likely to have B12/folate deficiencies, so I followed this up, and found more than a few articles and studies.........

As I was doing this I was also rooting around on the PA forum, and it became very clear that a lot of symptoms of PA also correlate with PD. I learned that that PA results from damage to the gut. It runs in families and can happen at any age. I had never heard of it at all until this year, and was surprised about this, surely anaemia was something to do with blood. But no, here it was, starting in the gut. And the cause. Autoimmune response. It destroys specific cells in the digestive system that absorb B12. This in its turn leads to deficiency and red blood cells that are mis-shapen and ineffectual.

I know this is not scientific language, and I am no scientist at all! Apologies.

The neurological component of PA comes along with a de-myelinating process, similar in fact to MS. And the symptoms? Well there is some crossover with PD, and other neurological conditions. Certainly with things like peripheral neuropathy.

An informal conversation leg to a discussion of where our blood cells are manufactured. Same place as mitochondria....... or I think so, but again, I am no scientist. And please feel free to correct anything inaccurate, I am just learning......... i know I am throwing ideas around, but what if Braak is right? What if loads of things start in the gut. I know someone who has turned around his young autistic child through diet. And more I wonder about l-dopa itself. And think the body, which includes our brains, is more interconnected and complex than current mechanistic medicine realizes. I know there are some fantastic medical thinkers out there who do join the dots. But on the ground there are many who don't.

So could there be a connection to PD itself? Not sure? Maybe?

Could there be a connection to the causes of PD? Perhaps, along with other pre-disposing factors.....

Is there a connection to L-dopa use? Almost certainly.

But it does raise some questions......

My own situation: I have had three loading doses, each made me feel marginally better for a couple of days then tapered off. I got a bad rash, and looked very spotty, still do. This from the folate tablets, I think. I'm waiting to have a test to see how well I've responded then go onto 3 monthly jabs.

I have very painful legs. Sort of purple, and a bit swollen, others may remember 'purple legs' on the forum.

Are they related to meds or PD?

I have now worn off B12, and feel WORSE than before! Sound familiar? A lot of numbness too. Is this peripheral neuropathy? I don't know. I've no-one to ask, or no-one medical. My doctor clearly does not know, and I do not see my neuro for nearly a year. I guess a blood doctor, whatever they are called, would know. But I am unlikely to see one.

There is more to do with l-dopa and B12. Little studies that no-one has connected. And then there is Katherine Holden, who did made a connection.......

Patients with PA have some of the same questions we do. Why don't I feel better? Why does my medication wear off before my doctors tell me it should? Why do I have to find out all this stuff for myself...........

And a lot more besides................

Apologies, this is I know a thread about Riboflavin, something I know very little about too. If there are problems that relate to PD/l-dopa and Riboflavin I am interested. And with any other deficiencies.........

I am frustrated with feeling like a turkey being carved up by medical specialisms. I would like doctors who join the dots and see me as a whole person. I am guessing that this frustration is shared by most of us, and our fellow travellers with different conditions.......