Invisible

[janetmenzies]

After a year of suffering, I have finally been diagnosed with PA and begun treatment, with no effect so far. I'm trying to be patient, I don't know how long improvement takes. But in the meantime what is upsetting me most is that everybody is completely ignoring the fact that I'm really quite poorly. Just because I don't have cancer, nobody's interested. Any advice on how to deal with this? Many thanks.

[pvanderaa]

The recovery from a B12 deficiency is a roller coaster ride of highs and lows in the short term. The average progress of repair to nerves occurs at a snails pace and is hard to see amid the noise of the roller coaster ride.

A tool that works for me is a logbook. It sounds very droll but it is simple and it works.

Log all your symptoms along with your own assessment of a severity score. Everyone has different symptoms to a different degree of severity so I can't really tell you what is good and what is bad.

Some new symptoms show up after the jab. These are the highs and others reoccur when you are due you next jab. These are the lows. Unfortunately some of the symptoms after the jab are very similar to the lows. These are counter intuitive and so it would seem things aren't working.

On the Internet are several products that test short term memory loss. I used one to assess my short term memory function on a daily basis. And I could notice over a period of months that it was getting better.

The severity of the symptoms that follow the injection can also reflect how low you were before you got your injection. These symptoms typically follow each other in sequence over a period of days.

Pain is one that is counter intuitive because as the nerves heal the signal to the brain gets stronger and is interpreted as pain. It is an illusion and once you get physically active the pain goes away. Gentle exercise is the key to triggering the damaged nerves to heal. Range of motion exercises makes the nerves work to move the appropriate muscles.

Once you start on B12 other symptoms can show up. Some of these can be from food or drink. Alcohol uses up all the other B vitamins that B12 needs to do its job.

Metabolism, that has been suspended due to the deficiency, kicks into high gear and uses up any stores of folate and minerals that were in your body. You need to also supplement with folic acid ( up to 5 mg - what ever you can handle) and a daily multivitamin.

Log your food and the time you take it. These symptoms show up from 3 to 48 hours later. Look back in your logbook to see if a particular symptom correlates to a certain food. Dairy and gluten are two from which many have issues.

By being able to sort out all the symptoms, you gain some control of your life back and can relax. Stress and worry are big consumers of B12 and eliminating stress makes the B12 jab last longer.

You will notice that your symptoms return well before your next jab. Use the logbook to write a list of all your symptoms and give it to your GP when you ask for more frequent jabs. Explain how you are monitoring the effectiveness of treatment in your logbook.

Your GP will at first treat you like a hypochondriac and talk down to you. Maintain composure and discuss what you think is working and what is not. The GP may go as far to prescribe anti anxiety or anti depressants. For me, I went along, monitored them and reported back on all the new and worsening symptoms. I eventually convinced my GP for more frequent injections. Ultimately leading to self injecting on a weekly basis.

My GP knows I am monitoring myself and reviews my progress annually to take blood and renew my prescription.

It's been 8 years for me and I still have symptoms and issues but I am moving in the right direction.

[janetmenzies in reply to pvanderaa]

Thank you so much for your reply. It's full of really useful information which I will re-read carefully. I will definitely keep a log book, and it's heartening to read about how and why the symptoms appear worse at first. I didn't realise about the need for general nutritional support, and will certainly get stuck into that. Will keep you all posted how it goes.

Cheers

[Frodo]

I don't think there's much you can do about people's attitudes. You might ask them if they would like to look at a website or book for more information, but most people will decline. I have found the most kind, concerned people do not believe I am "really ill" or even want to know anything about what I am going through beyond a polite 'how are you?'. Even severe daily migraine plus vomiting and stroke like symptoms did not convince anyone, including the GP, that I was "really ill". As you say, for that you'd need a cancer or MS type diagnosis, or something visible like a broken bone.

Best thing is to try and accept their position (so you don't become stressed about it which makes matters worse), BUT be firm if people expect you to go beyond your limits. Just say no. No need for lengthy explanations.

[janetmenzies in reply to Frodo]

Ironically, associated jaundice is making me look superficially healthier than ever! After years of sunbathing and dieting, I now effortlessly have the orange skin tone normally reserved for a chat show host, and lose weight between breakfast and lunchtime. No wonder my friends are not entirely sympathetic. They of course, don't see that every second I'm not working, I'm sleeping ...

[Sallybones in reply to janetmenzies]

strangely enough because I also have rosacea people think I look well!

[Foggyme Administrator in reply to Sallybones]

Me too Sallybones. A gastrologist recently wrote to my GP telling him how well I looked! Maddening...my body is breaking down and ceasing up and I have been virtually housebound for the last 14 months.

But that's okay because I look really well!

Goodness only knows what friends and family REALLY think....

😅😅

[Sallybones in reply to Foggyme]

ha ha should we start applying white face powder before appointments Foggyme? x

[pvanderaa in reply to janetmenzies]

Jaundice can be serious. Has your liver function been tested?

Any history of hepatitis?

For me, my gall bladder was full of gall stones about the same time my B12 deficiency was diagnosed. Since my family has a history of gall bladder problems I wasn't certain if it was hereditary or exacerbated by the deficiency.

Some people find improved cholesterol levels after starting B12. Has your cholesterol been tested?

Your jaundice may be a symptom you can monitor in your log. I would think it would not get worse from getting B12 injections.

[Sleepybunny]

The sad thing is that unless they have gone through similar problems they will probably not understand what it is like for you.

I am constantly told how well I look which makes it very difficult for people to accept I am ill. I used to be so pale before I started taking B12.

My own experiences mean that I am more sympathetic about people who look well but struggle with exhaustion and other non visible symptoms. I usually wonder if they might have B12 deficiency, thyroid problems, coeliac disease etc.

Are you a member of the PAS (Pernicious Anaemia Society)? There are some local PAS support groups. You need to be a member to access info about support groups.

pernicious-anaemia-society....

PAS tel no 01656 769 717

"I now effortlessly have the orange skin tone normally reserved for a chat show host"

Have you had a ferritin or other iron tests in recent years?

There is a genetic condition which can cause iron overload in body tissues. One of the possible symptoms is a suntanned look.

nhs.uk/conditions/Haemochro...

labtestsonline.org.uk/under...

"Just because I don't have cancer, nobody's interested. Any advice on how to deal with this? "

I've assumed you're in the UK. Some areas may run Expert Patient Programmes or Patient Self-Management (PSM) courses where you would meet other people with long term health conditions.

selfmanagementuk.org/

Perhaps you could carry a leaflet about PA, there is one in the PAS library section or when you feel up to it put up some PA and B12 deficiency posters or raise money/capmpaign for the PAS...raising money for a charity might get people interested in finding out more about the condition.

pernicious-anaemia-society....

b12deficiency.info/posters/

I am not a medic just a person who has struggled to get a diagnosis.

[janetmenzies in reply to Sleepybunny]

Thank you for your very helpful reply. Yes, I do have excess ferritin levels, and will get that tested again when I finish the B12 loading course. I think I'm making some progress with responses of people. I put up some photos and info about PA on my Facebook page and that seemed to help people - particularly photos showing the few and malformed blood cells. But the rude people who just say "you don't look ill" I just give up on. I'm too tired to bother with them!! Good luck with your treatment