Having now watched the video, and read all the posts on this, I have to thank Laura espeially for bringing this to the attention of the Forum. I have gone through something around 18 months of treatment for PA now, initially 3 weekly shots of B12, i.e. one a week, and then a shot every three months since. I have been treated for PD for nearly ten years with sinemet only initially, but for the last 4 years with entacapone (comtess, comtan). When I got the PA diagnosis, which was the result of two separate blood tests, the first which showed low B12, and the second indicating loss of intrinsic factor (please correct me if I have got the terminology wrong here, especially as my doctors know even less than I do). I genuinely thought that these injections were having no effect on me at all other than to make me very spotty and feel a lot worse that I had been doing. On my sixth injection I was suddenly treated to 2 days of feeling really good. Almost normal. Then things got bad again. Then the next injection gave me 2-3 weeks of feeling somewhat better, but nothing like the 2 days earlier. The one that followed that seemed to do nothing and by the time the 3 months was up I was getting very bad leg pains and oedema, my knees in particular were extremely painful. My June injection did nothing, and I got to see an orthopedic surgeon who thought my leg problems were PD & gait related. Towards the end of September I had another shot and within a few days all the leg pain had disappeared, thought I was now getting 'hot' legs and prickly feelings. This time I had a short period of feeling better. Since then have developed tinnitus and extreme lower back pain. Just before Christmas had another shot, and had about 5 days in which I felt more like myself. My son said I was more cogent than I had been for months. By new year I had slipped back again, and the last fortnight has seen a return of painful legs, one much worse than the other. Actually at the moment I feel at quite a low ebb, and I know this is because damage is occurring.

The video is made by people who do know about B12. There is nothing that was said in it that was exaggerated or untrue. Here in the UK one Doctor has been fighting this particular battle for some year now, and is beginning to be heard more widely. His name is Dr Chandy, and he brought his experience of veganism in India to the UK, along with the knowledge of how to treat Pernicious Anaemia and B12 deficiency. He is a regular GP, and has helped a lot of people. His finding are very similar to those of Sally Pachaluk. The real problem is that there is so little awareness, and the 3 month gap between injections is too long for many people, especially those who have already got neurological involvement. I have started to fight my corner on this, because as you can see from my year and a half of treatment, getting a diagnosis of PA is only the beginning. I am told that sometimes people do feel worse until the deficiency has started to reverse. Blood tests are a complete red herring once one has started treatment.

If you feel dreadful, much worse than you used to, and have new unexplained symptoms, balance problems that are a lot worse than before, and/or falling hair, odd skin rashes, and feel very foggy, please get tested for this. Especially if you have also developed a tendency to sigh a lot, or sometimes make involuntary groan sounds, and you get a kind of breathless fatigue. Or if your version of Parkinson is not at all the type that responds to vigorous cycling and mountain climbing, and even the thought makes you want to sleep........ It is not unknown to co-exist with PD, it seems as though there could be a link to levodopa treatment, and entacapone, I wonder could this be why stalevo simply does not do it for some of us? I am hoping that my GP will help me, but predict that it will take more than the letter I sent her in December. My other question, one that keeps returning is, can long term deficiency of B12 result in permanent damage that correlates to Parkinson Disease...... and could it be the reason for so many younger people getting diagnosed. All a bit chicken and egg, I know.

There are plenty of other questions.......

Lindy,

I would recommend you buy Sally Pacholok's book called Could It Be b12?

She is the doctor behind the video documentary. I have the same pain issues as you and frequently test low for b12. I am currently having injections. In Sally's book she talks of a man with pd who became totally symptom free after 5 yrs of b12 treatment. So I think pd that is secondary to b12 deficiency takes persistence to reverse, but we can do it. I believe this is my problem. I also have vitiligo (disappearing melanin) (you too?) and currently extremely bad balance. But the pain is pure hell.

Muireann

Thanks Muireann, for your reply. Yes, I have vitiligo, as my grandmother had, quite fast depigmentation, my torso and arms are entirely depigmented, legs on their way. Also quite severe patches of psoriasis. The balance problems are bad enough for me to have real problems, even with grab rails, of getting in and out of my beth to shower, or when I am out of my home. the walking pole which used to help with this is now of no use, I feel as though I am on a ship in a storm! You are so right about the pain, for me lower spine and legs, it is truly awful, and I am no wimp where pain is concerned. I do not produce intrinsic factor, and suspect that there are other, probably hereditary, problems with absorbtion.

Given the problems in diagnosis, I wonder how many people have 'other' conditions that have been triggered by B12 def. I read/watched? yesterday of the possibility that the demyelination in MS could be initially triggered by deficiency in B12, and untreated it might become irreversible. Could it also trigger PD and other neuro conditions, it seems to work at cellular level? My GP cited my MCV levels had improved, the film indicates that this is folate working, and the B12 deficiency gets masked by it. Even the newer active B12 tests seem to have problems, and the people studying them are learning as they watch. One thing I am absolutely sure of is that I need injections far more frequently than I get them. Seems that this is not unusual.

Again, I would say to anyone feeling symptoms as described on this thread, and in the video, get tested, by the best means you can. In the UK this currently means Active B12 testing, you can find out more here : http://www.b12d.org/ and here: http://www.pernicious-anaemia-society.org/

Lindy,

I tried to pm you but I think something went wrong? Can you check?

About 70 per cent of my pigmentation is gone now, flare ups of the process coinciding with dips in b12 and increases in pd.

You could increase your intake of methylcobalamin by taking 5,000 mcg sublingual nuggets Solgar from iherb.com or the solgar 1,000 mcgs several times a day to have more constant levels. You can't get these OTC in UK or Ireland. I purchase from iherb. You can also get slow release methylcobalamin transdermal patches from Amazon. You could try these methods in addition to shots.

For the psoriasis I recommend Moogoo irritable skin balm. Available online plus their website lists lots of UK stockists. Their entire skin care range aims to be near edible quality and is as toxin free as I can locate. Between Moogoo for skin and Ecover for household cleaning, I've pretty much eradicated the worst toxins I ingest. Also quit dyeing my hair.

Muireann.

http://www.youtube.com/watch?v=klobLSxv6i0

I am also someone with B12 deficiency who is symptom free after several years of treating myself. No medic recognised the problem, except my GP who muttered "looks like subacute combined degeneration of the spinal cord" but told me as my B12 level was normal he couldn't offer injections. I found the B12 group started by Sally Pacholok on wrongdiagnosis.com and got advice from members about how much B12 (lots, to induce a diffusion gradient), the type (at the time sublingual Jarrow or Source Natural methylcobalamin - not all makes are effective, someone on the forum tested them), what co-factors (folinic, cod liver oil, adenosylcobalamin at minimum). It was really tough at times, with many steps back as well as forward.

Subsequently, I found a private doc who recognised undiagnosed underactive thyroid of many years as the cause of the B12 deficiency. I've added T3 to the mix and it was the final piece in the puzzle. I feel thankful to be alive.

I also found Richard van Konynenburg
http://www.prohealth.com/library/sho...fm?libid=16560
who did a lot of work on ME/CFS - his protocol is similar to what I found effective. My brother has PD and I wonder if there's some connection between our conditions.

Janetah,

Thanks a million! 2nd link seems really imp for understanding methylation cycle, esp third video in link. I would say b12 def and pd are linked in this territory.

Can you tell us what symptoms you reversed please?

I'd just like to add here to this discussion...

There is a study out there comparing oral and injectable B12...

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

It shows that even in patients with pernicious anemia, oral can work. We have seen many people over the years at our PN
forum who do not do well on injections.

5mg a day of methylcobalamin orally gives many of us levels of at least 1000, and some of our posters are higher than that.
I tested out Puritan's Pride methylB12 and got a reading of 1999 myself.

When you take your B12 orally, you should do so on an empty stomach, because only a very tiny amount is absorbed passively (without intrinsic factor)... that way. Presence of food will impair the B12 from getting thru the small intestine.
The link above found that from 1000mcg oral tablet about 13mcg made it into the blood stream.

This is the link to the full paper above:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532799/

You can do this yourself. But it is best to get tested before you start to supplement to see where you are. And then to get testing every 6mos until you see a stable pattern with your choice of product and method of taking.

Methylcobalamin is very inexpensive and available online at most quality places. For many years we all at PN took Jarrow's brand, but I like the Puritan's product better myself.

Muireann,

These are my symptoms, all of which improved and most of which disappeared. I still have lactose intolerance and have to watch energy levels, over the years have been diagnosed with IBS, megaloblastic anemia, heart arrythmia, early menopause..all of which I suspect are related.

Physical:
Constant extreme tiredness and weakness
An ‘internal tremor’ (only way I can describe it)
Clumsiness
Constant tingling, burning and bunching sensation in soles of feet
Loss of skin sensitivity in feet and lower legs
Problem in proprioception, particularly knees and lower legs
Numb hands and fingers particularly at night, pins and needles in hands
Very stiff/painful upper back and neck, making turning head side to side difficult
Dizziness, particularly when lying down
Waking 3am and unable to get back to sleep
Nausea
Constipation
Occasional daytime bladder incontinence
Rapid heartbeat and palpitations, especially at night
Lessening of senses of smell and taste
Dry eyes, nasal passages and mouth
Dry skin
Extreme pallor
Splitting/weak finger nails
Dairy food (milk, cream, cheese) intolerance – causing fatty stools, bloating
Very painful/uncomfortable acid reflux particularly at night
Painful/uncomfortable trapped wind sensation
Gurgling stomach
Aching in rectal area
Flatulence and burping
Loss of appetite
Weight loss
Very cold extremities, particularly feet

Other:
Forgetfulness, e.g. leaving keys in front door, car door
Constant fogginess’ in head
Difficulty concentrating, slowness of thinking, dullness
Constant ‘pressure cooker’ feeling, rages

The 'Vitamin B12 deficiency is commonly misdiagnosed' thread on wrongdiagnosis.com started by Sally Pacholok is now here http://forums.bettermedicine.com/for...-medical-story

Jan

do you have pd?

Thank you Jan, that is very helpful. I am now working my way through Sally's thread which is really informative.

May I ask, did you get rid of all balance and gait issues?