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Pernicious Anaemia Society
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How damaged am I because of a delayed diagnosis?

Here are things I do know:

1. I have the Intrisic Factor antibody which makes this an autoimmune.

2. I have polyneuropathy in my extremedies because my B12 stayed too low too long.

3. I have permanent damage to my GI track (IBS) because the delayed diagnosis allowed the central nervous system to go unprotected by the myelin sheath for too long.

That is all that I know and all the doctors seem to be able to tell me.

My symptoms started about 6 years ago which means I probably had this issue before that. I had extremely low blood pressure 70/40 and could barely sit up much less stand. I was sent to multiple specialists and was diagnosed by a Cardiologist with Idiopathic Orthostatic Hypovolemia. Which basically means they didn't know why I had low blood pressure. I was put on some serious steroids (Florinef) to get my blood pressure up. Side effects: it may damage your adrenal glands and removes the potassium from your body. It was not a good experience and it didn't work. Back in the ER and now diagosed with "Cronic Venus Pooling". Seriously, it meant that when I stood all of my blood would pool in my legs....so compression stocking where perscribed and stay on your steriods. After my blood pressure tanked, my breathing was going next. Every step I took was like I ran a marathon. I kept telling my doctors that I was in a tremedous amount of pain and could feel my body slipping our from under me. My neroulogist did a nerve study and told me that my nerves in my legs showed signs of neuropathy as if I had been an out of control diabetic. He indicated that I had some cushion around the middle and asked if I had ever been tested. Not real happy with the comments, I went to my GP for a test. He decided to go a different route because he said all of my symptom were pointing to a B12 deficiency. I could no longer think clear and was begining to show signs of dementia. I was at the point where I could not get out of bed. My GP called and told me to get in his office ASAP. My B12 was at 195. Now I am on B12 shots every 2 weeks because for some reason my liver won't store it. My doc also wants my level to stay around 1000 in order for me to heal...Heal what? At this point the nerve damage in my extremedies is permanent. There is no idea what other damage has been done. One neurologist said that it would be a slow road but no guarantee how much I would get back. My cognitive thinking has never been the same. Unless I made an appointment with every specialist out there I don't think I will ever know the extent of the damage that was done to me as a result of the delayed diagnosis.

Has anyone else experienced this?

Thanks in advance for any response.

8 Replies

Hi bebe 1964:

A few weeks ago the news carried statement by Canadian doctors that they believe neurological diseases will surpass cancer in no time. There are 50.000 Canadians

with MS. The myelin sheat issue comes up also in Myastenia Gravis.

Because of your reference to damage to the sheating, I thought you would be interested

to browse some of the links I submitted earlier, on how can it be repaired. The easiest

way to access all of my input is to click on Directory, then choose "mashby" and review

the numerous replies and links I submitted earlier. I also submitted blog on side effects of B12 shots.

I figured on my own I had IBS, and got rid of it by eliminating grains and legumes from my diet. I also eliminated most foods with lectins. The inflammation in the GI slowly disappeared, and I maintain this healthy diet. Not even black pepper I use. Just olive oil and lemon juice. All food prepared fresh or from frozen, but in their natural state. No cans or boxes or any sort. No OJ, I eat grapefruit and orange every day. Eat beef and salmon for the iron plus the B12, vegetables and fruits, and dried fruit. Even nuts I eliminated. My calcium is obtained from skim milk, cottage cheese, cheese, and yougurt. It is close to a ketogenic diet, which later on I found exists. I sleep very well because of the tryptophan contained in bananas, meat, milk, and chocolate. Tryptophan is the precursor for serotonin, and we need that to prevent depression. By the way, I searched and found a diet for my blood type, B Positive, and perhaps that is why it seems to work for me. Blood type Bs originated with the hunters, so

their diet was rich in meat and milk. Also blood type B are known to have lipase, the enzime that digests fat. The foods I consume are selected to protect the myelin sheat. B complex pills contain choline, a precursor of acetylcholine, key to the myelin sheating. I have gone one step back, and am taking lecythin gel caps. Lecythin is a precursor of choline.

Best of luck with your issues.

PS: Just got back from my first visit to my first GP in the past five years (few taking new patients), for previously had to use walk-in clinic. She asked about immunizations, and was surprised I never had a flu shot. She also offered Pneumovax vaccine (to prevent pneumonia), and I told her I was not interested, neither in the new vaccine for shingles. She stated she will bring up the flu shot topic next year. I bring this up because of its connection to neurological issues caused by vaccinations to the current generation. Am having second thoughts as to whether I will return to this GP, the approach does not match my beliefs/regimen.

1 like

We do have a lot in common: B12 deficiency, IBS, and neuropathic issues. I developed adult lumbar scoliosis, diagnosed in 2010, and no one zeroed in on B12 deficiency being the reason for neuropathic issues and spinal cord damage. I have the x-ray a chiropractor took in 1993, and my spine was then straight but I had symptoms that I now understand are neuropathic. .

In addition, my blood test result for Intrinsic Factor from Feb. 7 is not yet available.

But the result for parietal cell was: it is negative. The acetylcholine receptor antibodies test (Myastenia Gravis) that I had to pay for did come through, indicating negative. My reading is <0.20 with reference being <0.40.

1 like

Hi Bebe 1964,

It is scary isn't it that the doctors don't realise what is happening right under their noses.. I have similar symptoms to you, but the nerve damage is so I can no longer walk. I have been in a wheelchair for nearly 3 years. Since increasing the amount of B12 I have my upper body strength has returned and I no longer have tingling in my fingers. I had double vision in one eye and that has now returned to normal. I had IBS symptoms also, I have cut out gluten, have limited dairy produce and no alcohol (miss my bacardi) and try to eat fresh/frozen natural foods as often as possible although not all the time.. and I rarely have many problems with IBS now. Besides sub acute combined degeneration of the spinal cord secondary to pernicious anemia, I also have an underactive thyroid, I also tend to become iron anemic very easily, I give myself daily or every second day B12 injections, take iron, folate, selenium supplements, recently started spirilina and also take a good probiotic. Also if the muscles in my legs hurt I take magnesium. I still get tired very easily, and sometimes I find it hard to speak, normally.. mostly this happens when I'm tired. A lot of the symptoms are similar to MS.

From what you've said above, I don't think the damage to your body will get worse i.e. you end up in a wheel chair if you now get enough B12 Methylcolabamin. I'm alot better now than I was 3 years ago except that I can't walk.

Best of luck,

and remember 6 months from now you could well be much healthier and happier.

By the way I live in Australia, cheers Deb


Thanks so much for the feedback and comments. Sometimes it's just nice to communicate with others that understand! Good luck and health to all of you.



Hi Bebe1964,

In the UK BNF guidelines for treatment where there is neuro involvement is an injection EVERY OTHER DAY UNTIL NO FURTHER IMPROVEMENT, followed by a 2 monthly maintenance jab. So you could actually approach your doctor for more frequent injections, if you feel that this would be beneficial towards reversing the damage done. The guideline is here:


Once you're on B12 treatment repeated measuring of your serum B12 level is pointless, it's your symptoms that matter. Having said that I think your GP is great despite the delayed diagnosis, as not many people get bi-weekly shots - some surgeries refuse to deviate by even a few days from the standard 3 monthly jab despite patients' suffering.

Hang in there, I believe some healing is possible, it just takes time.

I would make sure you've been properly screened for Coeliac Disease given your IBS history:


And bear in mind that PA sufferers' gastric issues are often associated with LOW stomach acid, maybe google this as there are simple things you can do to improve this.

You also need to make sure that you have adequate levels of Folate, Ferritin and Vitamin D, ideally well within the top half of the lab range. Folate is particularly important with regard to getting the most benefit from your B12 jabs.

I hope this helps.


1 like

" we'll keep an eye on that " was all I got for some time, I lost over 4 stone in weight and could barely put one foot in front of the other. Each time I went to the doc I was convinced I had cancer and was on my way out, she would weigh me and tell me I lost more weight and we should keep an eye on that. Finally she was inspired to try B12 testing and I was there for an injection every day for 3 weeks then every week then every 2 weeks and now we have settled on every 8 weeks. I have left with some cognitive disfunction, half my tongue is numb and gets worse towards B12 time, my toes are rather numb as are parts of my fingers and my balance is dreadful . I have not had the extremes you have suffered, but I really think all tests should be run if it's only a bloods matter, it would save so much suffering.


I had my bowel removed wen I was four then about age ten was told I had pernisous aneamia and had b12 every twelve weeks ever since . I am now 42 and always bin hyper and used to have bad nervous habits ,but now have bin told my behaviour is anxiety and have been bad since iv bin made aware ov it as I thought I was just me .wen searched anxiety it all clicked in my head as it came bak to b12 links .I don't know iv all my info still on files but have been on antidressants for years so I thought I was depressed and no one else has said to me ther was a link. Iv had some bloods checked after none for over ten years they just said its slightly high ,who can I see to check my nerves and mental state and can my daughter have this as iv bin bak and forth to doctors with her anxiety since she was young she's now 18 xx


How can I send this post to main site it went in my replies instead ov the post from ta x


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