Challenging A Bpd Diagnosis Due To Underlying Medical Problems?

[An0mie]

Hi. This is going to be a pretty long post. I guess there might be upsetting material too.

I was just wondering if anyone had any advice for me really.

I'm 27 now, but I was diagnosed with Borderline Personality Disorder when I was fifteen following a series of overdoses and emotional outbursts. I'd been in psychiatric facilities twice before following overdoses, but was seen by a psychiatrist all of four times who looked at my notes and decided yep, she's BPD.

I do have some of the classic features of BPD. I have thought disturbances, extreme mood swings, bouts of depression, very transient psychotic symptoms. I've self-harmed before and had suicidal thoughts but not made any genuine plans for suicide.

Since my early teens, I've been "tired". This started out by just sleeping for long periods (12+ hours a day). My family suggested this was psychological, and due to depression, and for the longest time, I believed this to be true. Over time, the "tiredness" evolved into fatigue. Not only would I need a lot of sleep, but I no longer felt refreshed by sleep. I'd be very tired in the day. This led to my life outside the house to become less and less. I stopped meeting friends, attending uni.

For the past couple of years I've been really reclusive. I become really anxious going out, and the anxiety took so much energy out of me that I was literally too exhausted to do anything. My life has been basically sleeping, and eating. My memory has also deteriorated to the extreme, I get frequently confused and I can't concentrate on anything. I also think I've become, for lack of a better phrase, much more stupid. Additionally, physically I'm quite weak, and my whole body is quite often aching or in pain.

I'm prescribed Quetiapine (Seroquel) and have been for a number of years now. In October, I decided to take myself off it to see if it made any difference to my functioning. It didn't, and I definitely realise just stopping it without talking to anyone was absolutely the wrong thing to do. I couldn't stop crying, and it really wasn't healthy.

What I did realise, though, is this fatigue was not caused by my Quetiapine. It'd been so long that I'd taken it that I'd completely forgotten how life was before. I was still tired all the time, and my emotions were completely out of control. In January, I finally went to the doctor. I told her that I'd ceased using Quetiapine and my reasons for stopping. She re-prescribed it, and I'm now taking it, but she also took bloods to see if there was any reason I was so fatigued.

When the tests came back, they showed my iron was a little low, and that I had folate and B12 deficiency anemia. She gave me folic acid and ferrous sulphate tablets and told me I needed a course of 6 b12 injections over the course of two weeks, and then to follow up, every three months from now on.

Those two weeks were like nothing I'd ever experienced. My moods were stable. I had mental clarity - no mental fog, no mind blanks, no confusion and memory issues. I had anxiety, but it didn't wipe me out. I slept, and woke up refreshed. I had ENERGY for once. I started thinking positively about the future for the first time in a long, long time.

Since the injections stopped, I've slipped back to how things were before. My mood has slipped down, I'm crying a lot and I'm irritable. I'm fatigued and back to feeling in pain. Basically, all of my neurological symptoms have returned. I've done a fair amount of research into B12 deficiency and I actually found it can cause ALL of those neurological symptoms as it leads to degeneration of the spinal chord. There are cases where people have been misdiagnosed with Bipolar disorder, Dementia and Alzheimer's, when in reality, they had a B12 deficiency.

So, I actually wonder, whether after all these years, my whole problem has been a B12 deficiency (I've never been tested before). I know for a fact that I improved, and it wasn't a psychosomatic improvement. I know that I've had periods of feeling "better" from BPD before, but I've always still felt exhausted alongside it.

I booked an emergency appointment with a doctor at the surgery, since my GP wasn't available. Unfortunately, I cried through the whole appointment. I stressed to her that my symptoms improved, and have now worsened again. She told me that I'm depressed, and that's the reason that I'm tired. I tried to explain that I'm tired, and that's the reason I'm depressed. She's given me antidepressants and has said that further bloodwork will be of "no benefit to [me] at this time". I can't have blood tests again for another two months. Additionally, she suggested that I may have CFS or something similar.

I feel really terrible about this outcome, but due to being diagnosed BPD I feel like any doctor I approach is going to just approach everything from a psychiatric perspective. Hell, even I did for years, I convinced myself it was all down to BPD and depression, but I'm not so sure.

I've contacted MIND and Rethink for advice, but they haven't gotten back to me. Maybe they think I'm crazy. Maybe I AM crazy. I was just wondering: does anyone have any idea how I could go about challenging my BPD diagnosis and getting further treatment for B12 deficiency? Has anyone had any success challenging the NHS? Any stories of misdiagnosis?

If you've read this far, thanks. I know it was a pretty tedious post. I'm venting because I'm just feeling so desperate to get this resolved.

[walker]

dont think you are crazy for one moment

pernicious anemia is a lack of B12 (actually think there can be other reasons, but dont have knowledge of them)

we knew someone who had this and seemed to have VERY similar symptoms to you

AND

after her first bout of injections was as high as a kite and had boundless energy and was told by the dr this would happen and she should take it easy as she would come 'back down' again

which she did

if you have pernicious anemia you have it for life and will need injections periodically for life - i believe

if you are in the uk go to see the gp who diagnosed you - again - or demand another opinion

how can they be giving you the b12 then just deny it was an issue

and they wont know if you still need it unless they do a blood test

and ffs it is hardly a problem taking some bloods from you to test

pernicious anemia i dont think is routinely checked for so they would have to be looking for it

if you are not in uk - dont know how your health system works

but

DONT GIVE UP

its not a nice thing to have

but if it helps you feel better that would be fantastic

[lonelyheartemma]

I don't know too much about vitamin B12 deficiency but I have a lot of physical problems and have experienced the same sort of thing. There are lots of doctors who dismissed my physical problems for years and blamed it on depression and anxiety. My heart rate was 120+, they said it was anxiety. I had digestive problems, that was anxiety. I experienced dizziness and fainting, guess what, that was anxiety too. It wasn't until I ended up in hospital a few times that they discovered there were genuine things wrong with me.

Then there are the doctors who look at it the other way around, the ones who either ignore the mental health problems completely other than to say "you don't still need anti-depressants do you?" and try to take them off my prescription, or the ones who say "you're only depressed because you're physically ill, I'll change your prescription, that will make you feel better and then you'll feel happy again."

Both kinds of doctors can be irritating because all my illnesses are part of me and however much or little one causes the other, they definitely do have an effect on each other and usually I want all my health problems to be taken into account when a new treatment is prescribed or suggested. The cmht thought playing basketball would be good for my depression, they said they weren't interested in my physical health so they didn't know that kind of activity could put me in hospital. It was lucky I did know! But it's also possible to use the doctors' attitudes to my advantage because if I just want to discuss my physical health and I don't want my mental health to come into it I know which doctor to see.

I don't know if your surgery allows you to see different doctors every time (though someone told me on here that you're always entitled to a second opinion) but it's often worth seeing another doctor. It's ageist of me to say it and of course it won't always be true but often the older doctors who did their training when mh wasn't nearly so accepted are in my experience more likely to ignore the mh side and focus on the physical.

But I think even if physical problems are 100% caused by mental health problems that doesn't really matter. The point is you are tired and in pain and no matter what the cause, those feelings are real and you have to experience them and you are just as entitled to help with that as a non depressed/bpd person with these problems. (And it might vary from person to person but I've often had 2 identical blood tests in less than a week even though my blood count is low, I haven't had 3 whole months between blood tests for years!)