Fed up of my family thinking I am a h... - Pernicious Anaemi...

Pernicious Anaemia Society

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Fed up of my family thinking I am a hypochondriac.

charks profile image
41 Replies

Do any of you have the same problem? They just don't seem to understand that what I have is a life threatening illness. It so annoying. When I describe my symptoms and how B12 reversed them I think they don't believe me and are just humouring me. I have sent them links to medical articles but they don't bother to read them.

41 Replies
Pickle500 profile image
Pickle500

I completely understand.

Becoming B12 deficiency to such a severe degree has been my greatest curse and blessing. I was so shocked at how much dysfunction a B12 deficiency could cause--including mental and emotional problems--that it opened my eyes up to a profound truth.

Humans know next to nothing about how the inside of the body works.

So, of course if it is frightening and strange to me and you, it is very frightening and strange to everyone else. Even though we read these online articles about how certain foods can 'improve sleep, memory, nerves' etc, we don't take that very seriously, do we. We think vitamin deficiencies are a minor inconvenience and food will give you a 'boost'. We don't think of deficiencies as 'life threatening' or as bad as a disease. They can be 'fixed' or reversed. Just add in more of what's missing, right? That's the commonly accepted way we're all expected to think about it. That is what I've been told by several medics.

But when it comes to B12, everyone is wrong. Especially because B12 is produced in the gut and is needed from the diet. Until it goes wrong, it's not a problem. But now it is going wrong. Probably because we live in stressful times, with poor nutrition and poor food supplies.

We have lost touch with the earth. And we have lost touch with our need for B12 from the soil and from farmed animals.

The way I cope with it all is to think that I've been let into a secret, special exclusive club that is one-step towards enlightenment. We have been chosen to get an inside scoop on what the world is doing wrong. And we can try to advocate for change.

We just cannot expect much sympathy or understanding, sadly.

charks profile image
charks in reply to Pickle500

The lack of knowledge about B12d is truly worrying. One family member has diabetes and takes metformin. I have tried to warn her about possible B12D but she says the doctor would have told her about it.

Technoid profile image
Technoid in reply to charks

Sorry to hear that Charks. As for Metformin, a warning to that effect is literally on a UK government website... so not sure how much more of an official warning you can get. I'm way past the point of being surprised at GP ignorance, I now default to assuming their ignorance in nutritional matters including nutritional side effects of medication (which can be life destroying/life threatening), until otherwise proven. *sigh*

gov.uk/drug-safety-update/m...

I would send above link to the family member. If they shrug or ignore it, well at least you tried to warn them....

Pickle500 profile image
Pickle500 in reply to charks

We all rely on medics to know, don't we? But not many people are comfortable with the thought that a Doctor might not know something about a medical condition.

My personal experience, from losing a parent at quite a young age, is that they do get it wrong. So I was almost waiting for something like this to happen.

Doesn't make it easier. And we are all on different journeys. I think if someone very high profile became deficient it might help everyone else. Someone with fame and money and influence.

wedgewood profile image
wedgewood in reply to Pickle500

Some one with fame and money would be getting private medical treatment , and not be facing the problems that a Joe Bloggs has with P.A. They would not realise what a terrible fight it is to get a diagnosis and correct treatment.

Pickle500 profile image
Pickle500 in reply to wedgewood

Perhaps then their family member. Someone close to them who doesn't have their money or stature, maybe their mother or father. Again, it relies on their famous/successful offspring believing their account of things. It's all happening inside us, isnt it. There's little physical proof to show.

I think basically, B12 subverts all rational thinking about the body and is too scary for most people to accept. Including the best physicians.

Most people around me said 'you need to worry about your mental health' when B12 deficiency WAS the cause of my mental health problems. My depression lifted and panic subsided with treatment. But then came all sorts of dilusions and imaginings and stresses with my partner.

Did I need therapy? Not when I had enough treatment.

As I say, human beings know next to nothing about how the insides of the body works. Partly that's because we aren't schooled correctly. We're taught to treat an arm as an arm, a brain as a brain, a liver as a liver. No-one thinks about medicine holistically.

For this reason I resorted to TCM (Traditional Chinese Medicine) with acupuncture and cupping. They were able to highlight that 'I had alot of toxins in my body'. But why? Acupuncture actually helped my B12 symptoms quite a bit.

But even the Eastern doctors don't know about B12.

Even we don't really know about B12. We emphasize that 'Pernicious Anemia is the most common cause of B12 Deficiency' but how could we know that when the majority of people don't find out the cause of their deficiency?

We need a gut health school, we need more emphasis on nutritional health studies and we need someone to fund it asap.

EllaNore profile image
EllaNore in reply to Pickle500

One thing I recently said to my doctor because they acted like the things that were wrong in my body were not connected to one another because if my foot hurts it shouldn't have anything to do with the upper part of my body right? But my answer to her is we are one unit everything in this unit makes itself work correctly, and if one thing is not correct the other things won't work smoothly either. We're all one unit everything is absolutely connected to each other and it's held together by skin. Everything in our bodies is related to the other things in our bodies. If one thing is broken another thing will break and another thing and another thing and another thing until we are completely broken, which is what B12 is doing to us. B12 is slowly breaking everything in our bodies. And for me it's all connected brain guts nerves skin bones blood it all works together to build this one unit that is each of us. I'm just so frustrated with doctors!

Pickle500 profile image
Pickle500 in reply to EllaNore

Sadly a curse of their training. B12 is an anomaly - as are most nutritional deficiencies I believe. They seem to affect many parts of the body and this defies conventional medical science which wants to delineate each piece to become more specialist.

The GP or primary physician is the generalist and so it falls to them. So I feel there is a gap here for nutritional science to step up in priority and for more nutritional scientists to join medical practice. I suppose if they are not taught about it medical science or during a medical degree, it may be hard to take a specialist stream in nutritional science.

The biggest breakthroughs seem to come from the outsiders. Elliot Overton in the UK is pioneering nutritional health and the impact of Thiamine (B1). Dr Zach Bush in the US has a big focus on gut health and is a medical doctor.

Unfortunately alot of medics consider these things 'woowoo' science. Maybe because they can't be measured with any precision. No measurement = no evidence = no data = no condition. I believe it's a whole different way of looking at the body that is like a foreign language to the medical community. But with the rise in numbers, they will have to do something about it soon.

EllaNore profile image
EllaNore in reply to Pickle500

I think you're right. They definitely do need to start doing something about it soon. It just surprises me doctors are people they can have this too. I guess there just hasn't been a doctor or enough doctors with B12 deficiency or pernicious anemia to make a change. I don't think this is that rare of a disease as they think it is. I hate to wish this on anybody but I wish that doctors could know exactly how this feels to have it. Maybe then they get their head out of there crack and do something about it

EllaNore profile image
EllaNore in reply to Pickle500

My gastroenterologist last week sat and talked to me more than any other doctor has. She's actually wonderful but she said to me we hear hooves so we think horses nobody ever thinks it could be a herd of zebras. She said you're a zebra. And we need to connect the dots so that we can find what's going on here. She said even though you have B12 deficiency you should let doctors test you for other things just in case you have other autoimmune diseases that are being ignored because too much emphasis is being put on B12. And I totally get that and I totally get that I'm a zebra we're all zebras. So do I blame everything on B12 or do I let them keep poking and prodding at me trying to find something else? I don't know so today I go for an ultrasound for a blood clot in my leg that I just don't think is there. But what if it is? So I go. And it drains me and it exhausts me and it's expensive emotionally and financially. Anyway I thought it was interesting that she called me a zebra. In a way it made me feel validated and seen.

Pickle500 profile image
Pickle500 in reply to EllaNore

Yes, that's quite an intelligent metaphor and it's nice that it made you feel seen. Medics do have a challenge to make us feel well and OK and like you say 'seen'. So many times they spin the line of 'your negative test should be reassuring'. But what if it is isn't? When you know you're still unwell but all your given is 'the testing says you're not and that should make you feel better'. As if they assume that it IS somatic before assuming that maybe the patient is right and there are other issues here to unpack or unpick.

So it's great that they are doing further tests on you. But I know exactly what you mean about thinking it's B12 related. For instance, during my deficiency my eyesight went blurred. This didn't happen at the start though, only as my recovery progressed. It was so bad my wife insisted I went to the opticians and I was due to go anyway. I left with my first set of prescription glasses and a diagnosis of an astigmatism.

I've never worn the glasses.

Within 2 months, the eyesight problem resolved. I did say to my wife I thought it was B12 related and she dismissed it entirely saying I was 'obsessed'. But which test was correct? The opticians? Or was it B12? Since I see worse with them on, I believe it is because of B12. And I wasted £200 on glasses I probably won't ever wear.

And it's things like this that make me feel that all I/we can do is keep pumping ourselves with B12 injections and hoping for the best in our recovery. And of course this upsets conventional medical wisdom. Just in the same way that UK GPs offer PPIs for gut problems - this is an ineffectual and in most cases more harmful prescription, especially for B12 levels.

But these Doctors are simply following their training. Which leaves us patients at a dead end. And that's a scary place for most of us to be.

Either way, it sounds like it's worth having a few further tests then since you have a helpful Doc!!

EllaNore profile image
EllaNore in reply to Pickle500

You're so right pickle 500. My eyesight is blurry as well. It's funny that you brought that up. Because it actually prompted me to go get my eyes checked a months back and I have 20-30 vision which is really good considering my age. I need reading glasses but that's it. So it doesn't address the blurry vision the tired eyes. And when my eyes get messed up my brain gets messed up as well or maybe it's the other way around, I don't really know. But I think that my eye problems are B12 related. Especially when I see a flickering light or movement out of the side peripheral vision, it instantly affects me. And B12 does affect the blood vessels and everything around your eyes according to what I've read. There's a direct link between B12 and your eyes. And the fact that nobody could find anything wrong with all the other symptoms that I have, That's what leads me to believe everything is B12 related. The injections are working to a certain point but maybe they're not going to work anymore for me. Maybe this is as good as I'm going to get. I don't know. So I just keep injecting. But after 38 years of having something it's bound to have irreversible symptoms. I did luck out with this gastro. She's actually just the go between between the real gastric doctor. I don't like the doctor she's actually working for but she's awesome. Unfortunately, I don't get to see her again for 3 years. And she can't really help me with anything else. But she's a good doctor and she listens and she gets it as much as she can, more than anybody else.

Sleepybunny profile image
Sleepybunny in reply to EllaNore

"Especially when I see a flickering light or movement out of the side peripheral vision, it instantly affects me."

I have this issue too EllaNore, I have been diagnosed with chronic migraine.

Have your doctors considered migraine?

It can be painless ( sometimes called silent) and can affect other parts of body besides head.

I have a condition called Visual Snow which is related to migraine which i think was triggered by B12 deficiency.

The migraine type symptoms I have, make me extremely sensitive to flicker. Can't cope with Christmas lights that flash on and off...I have to ask people to turn them off.

EllaNore profile image
EllaNore in reply to Sleepybunny

Wow sleepy bunny, thank you so much. I'm so sorry you suffer this issue too. It is quite debilitating at times. I can get sick to my stomach almost instantly. And if it is dark with the flickering light, it is even worse. I get discombobulated instantly. I haven't really even had a chance to tell doctors about how terrible my headaches are and all the symptoms. We get to a couple symptoms, but get side tracked. I made a list and I want to give it to them, but I keep putting it off because I'm afraid of the reaction. The effects of all the gas lighting and all of the misdiagnosis for so many years have made me really reluctant to put myself in a position of being doubted again. So I haven't had the guts to walk into the office and hand them my list of symptoms. Headaches being one of the worst issues. They're so debilitating they they put me in bed for days at a time sometimes even a week. The problems with my eyes are really incredible and they affect my mental stability a lot. The little lights on the TV or other electric things, can be very hard to look at. Light of any kind is one of the worst things for me. Whether sun light or man made. I sit in dark rooms all the time. My lights are rarely on at night. I also have a strange blinking problem. I have episodes where I blink excessively like a strobe light and it makes it hard to walk and talk. It is better lately, but for 5 years is was a serious problem. When driving, I couldn't tell if my car was rolling forward and I rolled into the back end of the car in front of me at a light once. Have you ever had anything like that? I've never found anyone else with it. They tested me for terrets syndrome. But found nothing wrong. It was all in my head and from stress. I was depressed etc.

Do you still have your issues? Has anything helped you? I don't want to lose my ability to drive. Driving is everything to me. It's my best friend and my stress reliever. If I lose the ability to drive, I will surely wither away. Between headaches and lights, it's very debilitating. Thank you for this and wish you the best with it. I am going to Google those things.

charks profile image
charks in reply to Pickle500

My eyesight got very blurred. I didn't do anything about it because one of my B12D symptoms was depression that made me 'couldn't be bothered' plus I had an irrational fear of anyone in the field of medicine. Anyway within three days of taking B12 I woke up one morning and had perfect eysight again. It was a miracle. Yet again my family don't believe me. And my irrational fear slowly ebbed away as I got better. I now just dislike them for the way they consistently give me wrong advice about B12.

Sleepybunny profile image
Sleepybunny in reply to charks

"plus I had an irrational fear of anyone in the field of medicine."

After the experiences I had , I'm not sure that fearing doctors is irrational in some situations....

EllaNore profile image
EllaNore in reply to charks

It's not an irrational fear of doctors it's very rational. And you had every reason to feel the way you do about doctors. Sleepy bunny just posted a really great article about doctors and gas lighting. You should check it out. Your fear of doctors is substantiated and you had every right to feel that way. I'm really sorry you have suffered so much with all of this. Trust yourself.

Nackapan profile image
Nackapan in reply to wedgewood

Yes.Many private doctors are NHS doctors as well.

Hoping they get the time and canary more to pass on.

charks profile image
charks in reply to Pickle500

I think she is also a celiac/gluten intolerent. She has bloating and chronic abdominal pain. Her doctor just prescribes PPI's for her. I have told her that she is probably gluten intolerent but she says the doctors would have picked it up. I can't believe how much people trust their doctor.

Pickle500 profile image
Pickle500 in reply to charks

The Doctors are only going by what they're told most of the time. At least they do now know about metformin. But until 'official communication' is issued, they won't tell a patient. So if they're waiting on official guidance, that surely has to come from the government office. And we all know what our Health Ministers get up to these days don't we. Really care about peoples health don't they 😆

wedgewood profile image
wedgewood in reply to charks

Low stomach acid enables bad bacteria to be established in the “gut” . PA patients have low/no stomach acid (Hypochlorhydria / Achlorhydria)due to Intrinsic Factor Antibodies destroying the Parietal cells which produce both The Intrinsic Factor and stomach acid )

The bad bacteria cause pain and bloating and burping and upset the stomach flora ( good bacteria) I found that a good pro-bacteria ( Symprove) helped me . Also natural pro bacteria like organic sauerkraut , natural yoghurt , Kimchi , kefir etc are excellent suppliers of pro bacteria . Once good bacteria is established and nurtured . the gut problems will heal . Taking PPIs or any acid reducing medications exacerbate this problem . Chewing food well enables enzymes in the saliva to start breaking down food . Eating slowly and taking smaller meals more often can help . acidic drinks with meals — diluted organic apple cider vinegar , Swedish bitters etc can help . Best wishes .

PS . I really believe that PPIs are making the problem worse . Low stomach acid can cause acid reflux because the oesophageal fails to close tightly. It does close tightly if the stomach acid is strong . Strong stomach acid will make holes in wood ! Weak acid will cause oesophageal pain when the oesophageal sphincter fails to close tightly , and leaks .

wedgewood profile image
wedgewood in reply to wedgewood

Somehow” probacteria “‘appeared instead of probiotic ! SORRY ! Spell check at work again !

Skylane2 profile image
Skylane2 in reply to wedgewood

wedgewood. My husband has esophagual reflux disease and we found a special diet for him he’s to drink a full glass of water ATTER his meal. 30 minutes after. This allows the stomach acid to digest the food and then after he eats, water will wash the acid away. For a snack he eats an apple. This has helped him tremendously. I don’t have pernicious anemia but I do have Hasimotos Thyroiditis and take B12 in addition to my thyroid meds. I agree with you about the probiotics. They are a tremendous help and so is a plant based diet. I love sauerkraut but cannot eat it as I have an excessive amount of histamine in my blood so pretty much everything acts like an allergic reaction. I remember reading about the Daniel diet. It’s in the Bible. Daniel ate fruits and vegetables and got thrown in the Lions den for it. But he looked healthy😉I want to look healthy again. I’m tired of feeling bad and being “pale” so I’m doing that “ plant based diet” and I’m not telling my doctor anything! I’m just flying it!! In the states we celebrate Thanksgiving in November. We’ll all my kids and grandchildren told me how good I look so that’s good enough for me. About the B12 supplements. I take one capsule everyday ( can’t get the shot here) but Garden of Life brand B12 seems to be a good substitute

Skylane2 profile image
Skylane2 in reply to Skylane2

sorry it’s not “flying” it’s trying it.

Technoid profile image
Technoid in reply to Skylane2

Hey Skylane2,

If you are going fully plant-based, there are a couple resources I' recommend:

Vegan Health's "Daily Needs" is excellent at describing the main nutrients to watch out for : veganhealth.org/daily-needs/

The primary nutrients to watch out for are:

B12 (obviously 🤪)

Protein (2-3 servings of legumes a day)

Iron (might not need to supplement, use garlic, onions, vitamin C sources and beta-carotene to increase absorption, caffeine away from meals)

Vitamin D

Iodine

Calcium

Vitamin A (if your blood sugar is ok, carrot juice is a potent source, covering the requirement with ~40ml 3x day even if you eat no other vitamin A-containing foods which is unlikely)

Omega 3 EPA/DHA

Zinc

Selenium

Some extra Choline (200mg or so) is also a good idea as explained here : patrickholford.com/advice/p...

Dr.Greger "Daily Dozen" app is a great way to get started on portions per day of various foods : nutritionfacts.org/daily-do...

There are a couple of good multi's that are worth considering:

Veg1 from the Vegan Society : vegansociety.com/shop/veg-1...

Vegan Vitality (UK) - vegan-vitality.co.uk/produc...

Complement : lovecomplement.com/products...

Wholier : livewholier.com/products/mu...

Hippo7 : hippo7.com/collections/supp...

Sunday Natural Veganlife Essentials : sunday.de/en/veganlife-basi...

Eimele Essential 8 - eimele.com/products/essenti...

Each has a slightly different nutrient composition so matter of looking at which one best fits your needs

A supermarket multi may be cheaper but these usually contain things you dont really need, whether that matters or not is up to you. Only thing I would be careful of is high vitamin A in supplements as per this quote from Jack Norris RD "—as retinol, retinyl palmitate, or retinyl acetate—can cause osteoporosis at typical amounts of 1,500 mcg (5,000 IU)". Supplementing 50% to 100% RDA of Vitamin A should be ok.

Finally there's what I would call the extra sauce supplements, not strictly necessary on whole food plant-based diets but may be helpful.

YMMV :

Moderate dosage B-Complex

K2 Mk.7

Magnesium

Phosphatidylserine

Taurine

Creatine

Beta-Alanine

Any questions feel free to pm.

charks profile image
charks in reply to wedgewood

The thing is she and her doctors are treating her symptoms not the cause (I'm a believer in functional medicine ).She does take probiotics but her diet is terrible. She loves all the wrong things and I don't think she will never get better until she sorts out her diet. Mind you it's worth mentioning kimchi etc just to see the face she'd pull.

I used to get terrible bloating when I still was eating gluten. Which was very problematic for me as I can't burp. It all had to come out the other end!!!

Nackapan profile image
Nackapan in reply to charks

I would like to totally trust my doctor to at least order more tests if they don't know.It's the listening and taking an interest and caring isn't it.

Before and after treatment with b12 observed and documented .

Arrogance I can't abide.

Lack of training obviously needs addressing

One Gp did that for me.

However now over ruled by new management with more restrains on access .

Covering their backs more now as people sue.

So it's the guidelines that need reviewing.

PAS working on that!

All very slow.

EllaNore profile image
EllaNore in reply to charks

It's very scary how much people trust their doctors. People go around in life blindly trusting everything of authority. Doctors, lawyers, politicians, their sheeple they just go where they're told do what they're told and they go through life with blinders on. And then there's the shakers in the movers like us when something happens and the answer doesn't seem right we go and try to find the answer ourselves. Because our bodies are telling us there's something wrong no matter what the doctor say. There's something wrong with us. And it's a shame that our families don't think enough of us to believe us.

Polaris profile image
Polaris in reply to charks

I so agree about the mixed blessing of discovering B12 deficiency.

Not only was my sister misdiagnosed, at one time in a wheelchair, but now dear, long standing friends, who’ve been on Metformin for a while, are going downhill fast and showing serious signs of B12 deficiency.   As friend had been a nurse, I’d sent them Sally Pacholok’s book as well as latest Pulse article reminding GPs to test patients’ B12 when on Metformin - they told me it hadn’t been done.  Completely shocked that it was all ignored and poo pooed 😰 

Another friend’s baby grand daughter (vegan mum) is having really bad problems (I’d given them Sally Pacholok’s paediatric version of the book when she was pregnant).  

Am now in complete despair……..

EllaNore profile image
EllaNore in reply to Pickle500

That was really well said pickle 500.

Pickle500 profile image
Pickle500 in reply to EllaNore

Thank you EllaNore!😀

BS2022 profile image
BS2022

Completely empathise with your situation, and echo what everyone else has said. I accepted right from the start the I had to sort out my own treatment and monitoring because the medics just didn’t know anything about it.

For me it’s my partner’s family who don’t get it. They try to, but I can tell they don’t. My partner’s mum was very sick with Crohns when she was young, but went on to have curative surgery and has remained well since then for 40+ years. They had a positive experience with the health system and think it can fix everything for everyone. I have to try and field moronic comments from my partner’s father such as ‘what’s happened to your weight? You used to have the ideal frame. You need to eat more’ etc. And keep asking me when I’ll next be up for another cycling holiday when I’ve barely been able to leave the house for the last 6 months. I’ve started to limit my contact with certain people until I’m feeling much better to preserve my sanity. My partner and mum get it completely so that makes it easier.

I literally have to read Rudyard Kipling’s poem ‘If’ on a daily basis at the moment- it’s been my favourite poem since I was a child. But a couple of the lines are ‘if you can trust yourself when all men doubt you, but make allowance for their doubting too’. It seems to help me anyway. But completely understand how difficult this situation can be!

EllaNore profile image
EllaNore in reply to BS2022

I just read that poem. I love it. Thank you for mentioning it. I'm sorry your father-in-law doesn't get it.

B12life profile image
B12life in reply to BS2022

To add to BS2022's reply.

Thanks for sharing that poem. It hits the spot. I couldn't say it better than Rudyard did in "if".

I have lived the opposition he mentioned in the last 2 years from my immediate family, mostly over money. Ironically I was the one who helped them when needed. Yes, I am the 'rescuer'. It was upsetting to get the treatment I did from them in my hour of need. That is when I learned the most important thing is to love thyself as this poem states. Now I don't NEED anyone else's empathy or love, just mine and that of this forum. This is the space I feel safe to get empathy and support.

Keep hanging in there and welcome to the PAS family. It's become mine.

Sleepybunny profile image
Sleepybunny

Hi,

I suffered for many years before I finally worked out that it was B12 deficiency.

The hardest thing to cope with was not the severe symptoms caused by the deficiency, it was the lack of kindness and understanding from my GPs, other health professionals and some of the people close to me.

I was shouted and snapped at by health professionals and no-one really listened when I said I thought it was B12 deficiency...they were too busy labelling me with depression, psychosomatic symptoms, ME/CFS, hypochondria etc.

I was so scared and remember telling my other half that I thought I was dying. He found it very hard to cope with what was happening.

I suspect I have some mild PTSD symptoms as a result of the trauma.

The only way people can really understand is if they go through the same experience.

This blog post below is a letter to help family and friends understand what having B12 deficiency is like.

b12deficiency.info/to-help-...

She used the term Perncious Anaemia as a general term for B12 deficiency in her letter.

"I have sent them links to medical articles but they don't bother to read them."

I've done that and I've sent people copies of the books below but I feel I've now done as much as I can to warn the people close to me of the dangers.

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

When I talk to my relatives and friends, I say that if they ever need to know more about B12 deficiency then they can contact me with questions.

EllaNore profile image
EllaNore in reply to Sleepybunny

Absolutely sleepy bunny PTSD is a major part of the decades of mistreatment by the medical community. In fact I'm struggling with that at this very moment. It's been a very rough week because the doctors are really messing with me. But one nice thing is that my niece actually contacted me to ask me what was wrong with me because she's scared for herself and her daughter because they have symptoms that the doctors can't figure out what it is. So they asked her if anybody had any rare diseases in the family and to ask them what those are. And so she came to me two days ago. So, I posted a question here for her. For the first time ever in the last 38 years somebody's actually coming to me and asking me what's wrong with me because they're worried that it might be what's wrong with them. It really actually meant so much for her to come to me. It was the first validation from anybody in my family that I'm very sick.

EllaNore profile image
EllaNore

Hi Charks, I just want to say how sorry I am that you can't get the validation you need from your family. This is a very difficult condition to deal with. It almost feels like you have nowhere to turn, except this forum. The people that are supposed to love you the most think you're crazy and a hypochondriac. And the doctors think the same thing. And you swirl around in your head all these thoughts that other people are putting in there, and it's really hard to stay strong and believe in yourself. And after so much time you start to doubt your own self. It's all very, very, scary and I'm so very sorry that this is happening to you and all of us. But we have to stay strong and believe in ourselves and know that we are not imagining this and we are not crazy. It's something that I'm really struggling with myself this week. I lost a really good friend this week. I have to let her go, because she just doesn't seem to respect how sick I am and what it's doing to me mentally physically and emotionally And she's adding to my stress and my emotional and mental decline, so I have to put up my protective boundaries to her.

So yes absolutely we all suffer from the same thing you're experiencing. Stay strong you're not crazy, you're not a hypochondriac, there's really something wrong with you, and it is very serious. Love you self. Believe in yourself. The way I see it, I've sent this information, like you have, to many people who show symptoms of this or who I feel because they're related to me should know about it, in case anybody else has these symptoms. And if they don't want to read it that's up to them. It is very frustrating. But the way I see it one day they're going to have something wrong with them and they're going to go back and read that information or they're going to ask me for it again and I will be there to give it to them. All you can do is give them the information, you can't make them read it, you can't make them absorb it, you can't make them understand it and you can't make them believe you. They have to learn the hard way. B12s a really strange condition because all of us want to tell everybody about it to save them, to help them, so they don't have to go through what we're going through. All of us try to tell other people out of love and compassion for them and out of trying to save somebody from suffering like we are, and they just don't get it. It's so difficult and frustrating to deal with. So we walk around feeling very much alone, not really having anywhere to turn not really having any friends who really truly understand. So we come here to this forum for validation and to make sure we still have our sanity. At least I do. This forum is my only source of validation. Hang in there. You may not be able to save your family until they're ready to let you.

Scott-rock profile image
Scott-rock

My wife’s family were a bit like that, and they are highly trained nurses. They have slightly changed their tune after I had surgery for one of my conditions. And told about another confirmed one. Still to tell them about my pernicious anaemia, MGUS and severe cervical spine degeneration.

Even May GP who is really good was starting to think I needed humoured, and sent me to a neurologist to pacify me! That backfired, as he found the spinal damage and immune system issues , which is causing a lot of my symptoms now. He even wrote I need high dose b12 treatment to help with symptoms.

Cobalt1312 profile image
Cobalt1312

Hi charks, I'm really sorry about your family. I've experienced something similar. When I was initially diagnosed, I tried sending my family a bunch of short informational articles about pernicious anemia and B12 deficiency - including really concise stuff from the PAS. I think my dad and brother pretty much just never read any of it, and my mom read some but she confessed to me later that her reaction to some of what she read was "Oh come on, it's not that bad." I think when she told me what her initial reaction was, she was reflecting and feeling somewhat ashamed because she has seen firsthand how much my life has been negatively impacted.

It's very painful, and it's not really acceptable how unsupportive they've been in various ways, but when I look at each of them individually and consider things they are struggling with themselves, it's at least understandable why they struggle so badly to be interested and empathetic.

My brother in particular seems quite unfeeling and even unkind at times. I think he is the most fearful of all my family members - he is only a couple years different than me in age, both of us in our 30s, he has a growing list of health issues that someone his age really shouldn't be grappling with, and he knows pernicious anemia can run in families because I told him so. I think to a certain degree he needs to treat me like I'm making stuff up because he is overwhelmed by his own health issues and emotionally he is almost incapable of processing his fear.

Sending you a big hug

charks profile image
charks

I have a similar problem with my sister. She has had 3 miscarriages and one late abortion because the baby had neural tube defects. She finally had a baby after getting B12 injections. After my diagnosis I though she would be interested in getting tested. But she isn't. But she is a very anxious person - like I used to be before taking B12. Prefers to bury her head in the sand.

Cobalt1312 profile image
Cobalt1312 in reply to charks

Exactly, that's the same phrase I would use to describe my brother. His way to cope with stress is to bury his head. He has glaucoma and numbness in his hands... Actually he has struggled with paranoia in the past as well. I really worry about him. I've encouraged him so many times to get his B12 and IF antibodies tested and he won't. It's so sensitive I don't even bring it up anymore. I'm so sorry for what your sister's gone through. I will hope both of our siblings have a change of heart, if that's the right way to put it.

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