A new recruit???

[Nanifrani]

Hi, Not sure if I belong here or not! I have a number of medical conditions, symptoms of which seem to overlap with the symptoms of PA. My dad has recently been officially diagnosed with B12 deficiency after a lifetime of Macrocytosis and another close family member is struggling to get her GP to recognise her many symptoms as PA/B12 deficiency. 20 years ago my many neurological symptoms were put down to Parkinsons... however it has not progressed as expected and am now told its 'atypical'. I have a 15 year history of thyroid symptoms which culminated in having a near total thyroidectomy 8 years ago. I take Levothyroxine daily and also I have Vit D deficiency and take co calciferol 800iu. Having read so much about PA I am starting to wonder if I too may be B12 deficient. I will be interested to know if there are any others here who have been wrongly diagnosed with Parkinsons!

[Hidden]

I wasn't diagnosed with Parkinson's --/ in fact not diagnosed with anything as G.P was uninterested in finding out what was wrong with me---- but I can see how B12 def sufferers could be. I had tremors in my hands, I lost my balance and fell against walls ( thankfully my house is small so I tottered against walls, or kitchen units!) Dropped things frequently.

I wonder if your first action is to get complete bloods done, post the results here, with the ranges, and take it from there ?

Also print off the list of B12 def symptoms and tick all those you have. I know some conditions overlap but it's a start so you can get yourself feeling healthier.

[Jesswoozer1 in reply to Hidden]

There does seem to be such a link here symptom wise

[Lindylanka]

Oh Hi, Nanfrani!

Yes, I was diagnosed with Parkinsons 14 years ago after seven years of becoming stiffer, slower and more tired. Have had a dx of atypical/possible PD in all that time and only ever have been treated with levodopa. I was just four years after my last child when I first got problems. Levodopa helped immensely, but I too have not significantly progressed, and never had a tremor, except in my jaw, and an odd in/out hesitation in my right leg. Today however my right side is obvious to me but not to others, very stiff, especially my right hand, and I have significant neuropathy relieved a bit by levodopa, but not much. To cut a long story short I was dx'ed with Pernicious Anaemia five years ago, the injections helped me a lot, I had all the obvious PA symptoms and more! Two years ago my injections were stopped, and last year I had sepsis, all very complicated.

In this long mad journey I have had to research a lot for myself, and believe my PD is a familial variant, as my grandmother had it. The research I have done brought me to a place where I 'discovered' that the dopamine pathway and the methylation cycle (crucial to b12 synthesis) have a significant crossover point. In older patients there are studies that say people on dopamine replacement therapies have higher and more frequent b12 and folate deficiencies, but these studies are from Japan and Greece and get disregarded here. B12/folate are implicated in apparent dementia too, Martin Hooper's book and the Sally Pachalok book make this clear.

I am definitely responsive to both levodopa and B12, there are certainly many crossover points between PD and PA.

Are you aware of the more recent theories on Parkinsons that locate the possible cause as 'in the gut'? That seems to me to be a significant similarity. There are also indicators of auto-immune and inflammatory factors. So a lot in common.

It is not always the people with typical conditions who give the greatest insight into causes, it is often the outliers, i.e. people like us!

I don't have thyroid problems, though I have been tested many times for them, but there is a big link between thyroid, diabetes, b12 and vitiligo. I have the last two and a couple of other autoimmune conditions, psoriasis is one, it was helped immensely by B12.

I don't know if diagnosed 'wrongly' is the right phrase. It is anyway an umbrella diagnosis, and can differentiate into Parkinsons plus, Levy body disease, familial variants, and somewhere in a grey area between benign essential tremor and idiopathic PD. And nothing is certain anyway while we are alive! The UKBrain Bank has some very interesting info on that.

You don't say if you have had a scan. I have had two both negative, but my neuro still treats me for pd for which I am grateful. I wish I could say my b12 def was being treated, but it isn't, and tbh I have found that by far the worse thing to deal with. What is probably Parkinsonism is way less problematic, it slows me down, but b12 issues have brought me to a halt.

Apologies for this long post, but it is good to meet a fellow traveller, and thus a fair bit to communicate. Hope I haven't overwhelmed you.

[Nanifrani in reply to Lindylanka]

Hello there Lindylanka, thank you for taking the time to reply.

From what you say, you must have been fairly young when you first started to have problems....I was coming up to 40.

First symptoms were mainly mental.. tiredness, lethargy, brain fog, an inability to concentrate, an inability to cope at work and severe depression. Like you, I don't have the typical PD 'at rest' tremor, but in the early days there was a tremor in the little finger along with pins and needles in my right arm, both of which disappeared over the years.

I can certainly identify with the right hand sided stiffness and my legs frequently feel as if they belong someone else & don't respond as I expect. My balance is poor resulting in numerous falls and I find walking in the dark impossible.

I was diagnosed with PD clinically and the diagnosis was made only because I responded to treatment with dopamine . I too am on Levodopa, along with a host of other meds.

I've been aware of the theories that imply the cause of Parkinson's lies in the gut for a long time. I can remember having a conversation with a consultant whilst he was carrying out a colonoscopy in the process of trying to discover why I had lost 3 stone, had no appetite, was either constipated or had diarrhoea and was virtually unable to eat. Several times I've been tested to see if I have an ulcer, I've had emergency surgery to remove my gall bladder and have just been diagnosed as having GERD. I am currently on Omeprazole, which I have also taken previously. and a side effect of which is interference with the body's ability to absorb B12

I have, so far, attributed dry skin ( so dry on my feet that the skin splits), the disappearance of underarm/legs/forearm hair, thinning eyebrows and the need to hoover the hair off my pillow several times a week, to having had my thyroid all but totally removed. Episodes of racing/irregular heart rate have been monitored and attributed to too high a dose of Levothyroxine. Maybe this is not entirely the case.

I hesitate to go down the route of asking for blood tests for B12 deficiency/PA having seen how hostile the medical profession have been towards a close relative who is currently very unwell and exhibiting all the symptoms of the condition. Perhaps I need to think again, as there seems to be so many areas of similarity .

Thank you Lindylanka for sharing your thoughts and experiences they are much appreciated.

[Lindylanka in reply to Nanifrani]

Hi there, Nanifrani, I was 45 when I first had symptoms, very stiff in mornings and an inability to go down stairs in a normal way, had to take them one at a time, and sideways. Went though a slew of diagnoses for individual bits of my person, from frozen shoulder and trigeminal neuralgia to heel spurs and more.... eventually wound up with a fibro dx. I was at university at the time. It was clearly the wrong disgnosis, but someone on a fibro forum said the things you describe are neuro symptoms, go talk to your GP, which I did, and I was dx'ed after a dopamine challenge. It was in fact the only medication that ever made a difference. Still is.

The crossover between b12 and pd symptoms is definitely there, but I can recall the onset of symptoms that seemed markedly different to PD and non-responsive to levodopa. In spite of having fairly high fatigue levels I was always quite engaged and energetic, and very social. I developed a strange and overwhelming lethargy around five years ago, along with very numb and bizarre feeling lower legs, was soon mostly on the sofa. I went from being someone who was simultaneously engaged in a large scale project and a keen gardener and busy housewife to a zombie on a chair. Couldn't balance either and felt constantly dizzy. B12 / folate dxed, after about six months started to improve, but since then have had on/off success ith being treated. Right now a complete abscence of treatment for nearly 2 years, and not faring well. Hoping a neuro visit next month will help.

Take it from me, if you. do have b12 issues they will need treatment, it is not like PD which is a long very slow ride down. B12 is a rollercoaster. Get tested and if you are in the low normal or below, especially with low folate, push for further testing to ascertain whether you have intrinsic factor antibodies before commencing any supplementation, and take it from there. Be prepared for obstacles, if your doctors are helpful and aware you will be one of the fortunate few. And don't rule out parkinsons yet. Good luck with it all. Hope you find a way to a better level of wellness. xx