Acknowledged as ill, or not?

[Poppet11]

I know that we come from all angles into this illness, but it occured to me that many people are never acknowledged as being ill either before or after treatment?

I never was. If that is an opener....

[Braindead]

Hi Poppet

I'm still hoping to be diagnosed. I've seen two very patronising GPs in the last four years. The first decided that I was depressed and anxious, because I'd recently lost my mum. The second GP just read what the first had written in my notes and barely listened to a word I said. When I was describing the extreme tiredness I was experiencing, and the pain in my thighs whenever I walked up stairs, she just said "oooooh, me too......" - I could have slapped her! And when I told her about my loss of pubic hair, and complete numbness in that area, she said it was "a funny story, anyway". Well, I wasn't laughing.

My son just rolls his eyes whenever I mention B12 deficiency. He has complete faith in doctors, says they've trained for years and know their subject better than me. My daughter is studying psychology at uni and seems to think that she can analyse me! She has all sorts of labels for me. My husband is more supportive, he agrees that my symptoms seem to indicate a deficiency. Which is amazing, considering he's spent most of our married life calling me a hypochondriac because of my 3 - 4 day migraines.

I do have to admit that my failure to achieve a diagnosis so far is partly my own fault. When I first asked to be tested, I had been taking a daily iron & multi-vitamin; I assumed that if you didn't absorb B12, then it wouldn't show up at all in your blood. I was feeling so awful back then, that I decided to self-treat, and started taking sublinguals. When I found out about the Active B12 test, I stopped taking them and had that done. But I'd only stopped for six weeks, so of course this one also came back high.

So I went back on my sublinguals, and started on patches and a mouth spray too, and pretty soon I started to feel so much better. I carried on for about 18 months and although it wasn't quite a miracle cure, loads of my symptoms improved. I think this is proof that I was deficient - my son just says "placebo"!!

Not being believed does get me down a fair bit though, and I worry that every doctor I ever see in the future will read my notes and just assume that I'm a hypochondriac. So, I'm going to have one final attempt, and hope that whatever it says in that bmj article will help my case. I stopped all my supplements about five months ago, and most of those symptoms that had improved, have come raging back, along with a couple of very worrying new ones: the numbness around my genitals has spread to the inside of my vagina (sorry if this feels like too much information!), and I've lost the sensation of needing to wee when my bladder is full.

I've got an appointment with yet another GP on Friday, and I'm very, very nervous about it. I've managed a very good impression of a blithering idiot at all my past visits to the doctor, and ended up going home and crying in frustration every time. Let's hope I don't do that again! But even if I do get this new GP to run tests again - what if I'm wrong, what if they still show that I'm not deficient? Where do I go from there? Next stop, the funny farm?!!

[Poppet11 in reply to Braindead]

You might like to point out to your children that there is a big difference between education and intelligence...

And don't you sum things up in your last line. A fear of getting sectioned - when you know exactly what is wrong and no one will listen.

I think this problem is exactly why people keep quiet or play things upbeat. I've been seriously guilty of this - and it makes it so you cannot win!

If I can explain (as if I need to):

If we complain about our illness, others don't understand it in the least, including doctors. They simply reinforce the fact that we are emotionally disturbed to our friends and relatives. Even if they don't discuss matters with them, the simple fact that they don't acknowledge or treat is enough to do it.

If we then don't mention the symptoms then every one presumes we are okay and can carry on as normal. Yet this is only feasible for short periods. We then get sick again and make symptoms worse.

If we complain, the 'emotional' accusations come out again.

So then we make it worse. We play it 'upbeat.' We try to steer away from the accusations of mental health problems because we become afraid our problems are going to be compounded by serious accusations of mental health problems. (if you could see what doctors really put into my medical records it is enough to make your hair curl!)

We end up painted into a corner.

I know I have been guilty of this. I have played it far more upbeat than I ever should have. But if I could do something, I would do it, and happily. Because we all want to be 'normal.' But at the same time I would play down the bad bits. In fact, I wouldn't even mention them.

I remember one incident where I was asked to play X-box. I'd never done it before. At certain things I was a whizz - better than I ever was before I was ill. I found the whole thing fascinating! Why? But even while I was playing I was developing spasms in my arms and legs. I ignored it and carried on. (The games are only about 30 seconds long and I am a seriously stupid individual who will push herself anyway) But then we played a game where I had to have my arm behind me and I couldn't do it at all. I simply didn't know where my arm was! I was then ill for over a week after that game. Really ill. I could hardly walk and my vision went so blurred it scared me.

But did I mention the bad bits to anyone? I did not. I played up the good bits. I played up how I was much improved (my family had actually tried to get me sectioned by this time) I couldn't tell them the after effects they would have jumped on the 'crazy' wagon again.

... and this is what happens.

I completely understand your fears. Yet you have serious, and justified, concerns about your health. The sad fact is, that even if you get diagnosed and get 'treatment' they will only treat your blood. It is likely that you still won't get the neuro damage recognised.

... and you know what makes me really mad. It is the 'achievers' that take the most stick. If you were fit and hard working before, you are seen by those nearest and dearest to be somehow invincible. You always 'did' stuff in the past and it came easy to you - when you can't 'do' for them anymore they don't support you but attack you.

I think that is what hurts the most, being called paranoid and lazy for those who you've always given your best to.

I hope it goes okay on Friday. Ask for the BMJ article to be put in your records. Even if the doctor won't take notice of you then you want it recorded he won't take notice.

... and what is it with doctors who try to 'outdo' patients with symptoms. The, 'yes, I have that' attitude has more than worn thin!

[Poppet11 in reply to Braindead]

... and where the hell can a response such as your GP provided relating to numbness in genitals, come from?

It's bad enough having to mention something like that and then you get that kind of response.

What kind of brain dead idiot would come out with it? It's something you'd expect from drunken thugs on a street corner, not 'caring' professionals who you put your trust in.

What sort of medics are the training establishments churning out. Smart mouth, smart arses?

I thought it was bad enough being told to 'buy a sat nav' when I told my GP I was continually having difficulties with direction and getting lost - but yours beats mine.

Only words I can now come out with are of the swearing variety so I will take my leave.

[Lindylanka]

Just saw my neuro today. He is listening right now. I hope he keeps listening.

Poppet11, your description of what you experienced after playing your game is what happens to me after going out. Could be anywhere, anything, doing my favourite thing or my least favourite. A week out of my life to follow. Seems such a high price to pay for a half normal and very ordinary thing. Just to leave my home and not be punished with fatigue. B12 is a secondary neuro condition for me, but worse by far to live with than my primary condition.

[Poppet11 in reply to Lindylanka]

I suffer now constantly with muscles spasms and tremor to one degree or another. X Box is definitely out. I went out round a town yesterday - because I had to. I didn't walk for long and in flat shoes but I couldn't go out today. The 'fizzing' that I used to feel in my legs at rest, I then suspected, but now know, is tremor. You can actually see a very faint tremor in my feet at rest. If I lie on my left side my whole body does it. And the muscle spasms just happen, particularly in my legs, constantly at rest.

No way to live is it - with the clincians trying to say it is all imaginary.

[Galixie]

I had to make a deal with my GP to even get any testing done. She honestly believed that my fatigue was from not getting enough exercise, so I had to agree to go for a 20 minute walk every day for a week while I waited for results from couple blood tests she finally agreed to run. By the end of the week, I couldn't make it up a single flight of stairs without having to stop and rest at the top because my fatigue and breathlessness had become so much worse. I didn't even know what she was testing for, but one of the tests was serum B12 which came back at 220 (reference range 211-911). It wasn't officially outside of the reference range but it was low enough that she thought I might have pernicious anemia. She thought she only needed to test for parietal cell antibodies so she never checked for intrinsic factor antibodies. The parietal cell antibody test came back positive and, based on that, she told me I have PA. HOWEVER, a year later, after being on monthly cyano shots, I saw a hematologist who ran parietal cell and intrinsic factor antibody tests and BOTH tests came back negative! Well now I was told I don't have PA and the benefits I felt from the shots were all just placebo effect. I've been told that I don't really have PA ever since. I've been to multiple doctors including two naturopaths and the only thing they all agree on is that I don't have PA, but none of them can explain my B12 deficiency and, at this point, I just don't care what name it goes by as long as I can treat it and live my life.

[Poppet11 in reply to Galixie]

I don't know about the PA test, but the IF test should not be done within 2 weeks of you having b12 or it throws the opposite result.

[Galixie in reply to Poppet11]

It was tested 25 days after an injection but I had been taking sublingual B12 also. The fact that the parietal cell test came back negative after being positive previously seemed very odd to me and so I had both tests run again about three months later (while still getting monthly injections and taking sublingual B12) and they both came back negative again at that point. The idea of going off of B12 long enough to *maybe* get a positive result isn't appealing enough to try.

[Poppet11]

No, I don't think it is worth going off b12 to get a result but doctors should be aware of the issues and not take the test if it is going to be compromised.