I have been through hell for 5 days with extreme breathlessness and nobody would listen

[VamboMarbleEye]

This is my first post so please be gentle! I can't believe it that two doctors in three separate appointments this week, plus two paramedics, all of whom were informed that I have PA, did not realise that my breathlessness, where I literally felt like I was dying, was most likely a PA symptom. I have an injection every 6 weeks and they all seem to think this means I am cured! I have never been advised to take folate either. The issue was confused by the fact that I was prescribed the antibiotic macrobid for a urinary tract infection, and this tablet can affect the lungs pretty quickly if you have a bad reaction to it. The doctors said I just had to wait for the macrobid to wear off, in 3 to 4 days. The paramedics said it was caused by anxiety - well anyone would be anxious if they could not breathe! My blood oxygen levels were "normal" and my heart was "fine" and I was "sitting up and talking" so I must be OK! I have never felt so ill, so close to death, so scared to go to sleep, so helpless, so desperate, so alone, and so uncared-for and misunderstood in my life. I wanted to scream "This is not an episode of House! This is my life!" while they hummed and haaed and suggested it might be caused by the gastric reflux disease or because I am overweight or perhaps I should increase the dose of antidepressant? Five days of hell and in the end it was me and google that had the eureka moment. Why does this terrible, suffocating breathlessness happen? And what can I do to stop it from ever happening again?

[TACCT]

Have you checked your folate and iron levels. A deficiency in one of those can interfere with red blood cells formation. And from how long have you been getting b12 injections?

[Sleepybunny]

Hi,

Sorry to hear that you've had such a scary experience.

Sadly B12 deficiency due to PA or other causes is not always as well understood as it could be by doctors.

Might be worth joining and talking to PAS (Pernicious Anaemia Society). They may be able to pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Have members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

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

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

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

If you're in UK, I suggest reading the following documents.

If you're not in UK, might be worth finding out national/regional guidelines on treatment of B12 deficiency in your country and comparing your treatment with what's recommended in guidelines.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

I am not medically trained.

More B12 info in pinned posts on this forum.

[Nackapan]

I really hope for you it was a one off connected to the drug you took for your infection. It is situated scary when you are fobbed off being told anxiety. Yes you will be anxious if you can't breath! ! If it's any consolation I went to a+e before b12 defiency was found. I was so ill , couldn't walk straight. Electric waves going through my bead and body. Jitters and sweats. I thought I was going into a first or something. Most scary. The ambulance never came. My sister took me in. I was told I was having an anxiety attack. Not being listened to or symptoms taken seriously heightens your symptoms. All I could say at the time is . "I think you've missed something" they had.

Just keep going back if your symptoms arnt going. They have missed some thing. Take care.

[VamboMarbleEye]

Thank you everyone for taking the time to reply. I will keep nagging my doctor until I find out what's up. I still don't feel right with my breathing, but I am at least sleeping OK and not quite so scared.

Love to you all

Vambo

xxx

[Hidden]

That is truly awful. How very upsetting and annoying for you. Having been through something similar for many years before someone saw the light I do know just how soul destroying it can be. Just because your problems don't tick all the right boxes on a particular medic's mental check sheet they haven't a clue. You do mention though that you have one of the current 'it must be that' conditions as you are considered overweight, it seems to be the one trigger point for everything these days. You know there is something wrong so you just have to keep on going until eventually someone with a slightly wider view then the typical railway line mentality points you to the one specialist with an inquisitive brain who will find out. Best of luck and of course you have found this forum where many have been in a similar boat over the years.

[Hayley31]

Try drinking coconut water...it may help if pottasium levels have dropped. Ask for a renal screen to check electrolytes. It could also be anaemia or your B12 deficiency.