My story of illness and ‘recovery’

[GGourmet]

I want to share this to fellow readers, so that we can see there is hope but get a grasp on the reality of what recovery might be.

My story starts in my mid 20’s when I was diagnosed with IBS. I managed the condition for years, until my early 30’s.

I befell infection after infection after infection for about 10 years including pleurisy, bronchitis and tonsillitis. My tonsils were removed in my mid 30’s and although the bronchitis stopped, regular infections continued, including skin and foot infections which led to MRSA and C-Diff. Every time this happened, there was no alternative but antibiotics. Consequently, my IBS deteriorated further and further and I was continually tired and exhausted. Any you will know, this is no ordinary exhaustion, just loading a tumble drier is enough to put you in bed for hours.

I struggled with brain fogs but more noticeable for me was struggling with being around people, if I was in a group of more than 3. Working in London was impossible, because my brain couldn’t process my surroundings with the huge numbers of people and information. I knew something was very wrong.

I went to my GP and a range of blood tests was ordered. These came back with a B12 deficiency but that was not flagged by the laboratory and I had to go back and challenge this - not fun when you are this ill. Another test confirmed the result and that it was now lower at about 70 which is close to the minimal measurement level at which water could produce a similar value (so I understand).

My GP refused to accept there was an issue but I kept battling on and my family sat in on one GP meeting because I no longer had the ability to represent myself. Another GP agreed to follow NICE - I felt relieved that someone was listening. That was at 10am, by 3pm the GP telephone me to say that she had spoken with an ‘eminent’ gastroenterologist who said men almost never get PA and she should withhold treatment. Firstly, he was wrong and secondly he ignored all other possible causes. This was a major setback and thankfully with my BUPA membership, I managed to arrange referral to a neurologist who arranged a further referral to a haematologist. They were both useless. The neurologist didn’t listen to the fact that many of my neuro symptoms had subsided as I couldn’t cope without self medicating a haematologist advised loading doses (hooray - no), as these 7 days apart with follow up injections he clearly didn’t know NICE either.

During this time, as has always been the case, my diet was very high in B12 indeed, 2 days before one of the earlier tests, I had consumed the equivalent of 1kg of seafood mostly crab and clams - my favourite. The blood result wasn’t credible, if I didn’t have a malabsorption issue.

Eventually I managed to cut through the mess and got in front of a GP on the IBS issues. The GP referred me for IBS which by now was immobilising. Crohns, UC and SIBO plus others were tested for. The same story of nothing coming back positive just continued but, the consultant at London Bridge Hospital took the step of addressing as a standard case of IBS and prescribed a specialist probiotic (Symprove). It was expensive but was helping. That isn’t the end though. The very day after I was discharged from London Bridge Hospital, I collapsed on one of the platforms at Victoria Station. This was 2017.

I was rushed to St Thomas’s and discharged the following day. London Bridge Hospital referred me to a cardiologist and then I was referred to another neurologist. It was about 3 months of further intensive tests, scans and blood samples.

Outcome, was Vasovagus with global transient amnesia. But, it came to light that my sympathetic nervous system hadn’t been working properly for some years, as I had just started getting adrenaline rushes which I realised I hadn’t experienced for years.

Here we are now, in 2021.

My IBS has gone. Not just improved but gone. I’m on B12 injections every 2 months.

I had visual disturbance but 5 years of injections and sublinguals and I no longer have visual disturbance either. In fact, it was that which regular prompted me to go back home and take my sublinguals when I couldn’t see properly, as I left home. I now find myself forgetting for days on end without getting visual disturbance.

It’s been a very long, distressing condition where I never got a formal diagnosis but only suspicion it was IBS related. I’m 50 and feel 25. From starting B12 injections and supplements, it’s been around 5 years, so please don’t expect miracles within days of starting treatment, my miracle took 5 years to arrive and it was like a switch being thrown. The best thing I did was self medicate and take a very high dose sublingual in the early days.

[wedgewood]

That was an amazing story . Thanks for telling us . Really great news !Your IBS symptoms ( yes ,awful , I had those too ) were related to P.A. , which is caused by the destruction of the parietal cells which produce the Intrinsic Factor and stomach acid . The lack of stomach acid upsets the stomach flora , which then allows the proliferation of bad bacteria which causes the IBS symptoms . The lack of Intrinsic factor as well as stomach acid led to your B12 deficiency .. You were lucky to have BUPA membership ,,

But the ignorance in the medical profession about B12 deficiency / Pernicious Anaemia still abounds , and there are patients in the position that you were in years ago , failing to get the cheap treatment of B12 injections .

,suffering ill-health , losing their jobs , relationships and other miseries .

And now the b....... have seized the opportunity ( very crafty ) during the pandemic to tell us that all we need are B12 tablets ( NOT SUB-LINGUALS)

For many P.A. patients even sub-linguals do not help( I’ve tried hard with them , believe me , anything to avoid self- injecting , but to no avail , and I used them prolifically. )

Your story will be an encouragement to others not to give up hope . So thank you once again Best wishes .

[Hidden]

Thank you for writing this, it took me around this time to recover, having now relapsed due oral tablets I on my journey back. Unfortunately not completely resolved IBSThat on my bucket list.

👍

[Hidden]

Well done onwards and upwards now.x

[Narwhal10]

Thank you for sharing. I am so pleased that you have recovered. It is awful that you have had to go through so much. It’s a shame that lots of us are not listened to until we collapse and then heads are scratched because such health professionals have such poor knowledge of B12 deficiency. All the best. 😊

[Nackapan]

Thank you. I'm ususlly positive about improving my health.

Today not. A blip.

I'm 2 and a half years into b12 treatment

.Just what I needed to hear today.

Must be a wonderful feeling.

Take care and enjoy life.

Thanks again for taking the time to give us all hope

[GGourmet in reply to Nackapan]

Stick with it. As you read, it took me 5 years but the journey was often a struggle.

[Nackapan in reply to GGourmet]

Oh yes. I will stay with it .I love life too much.

[clivealive Forum Support]

Well done GGourmet for persevering.

I wish you well

[Frank77]

Fascinating story. Thank you...

[GGourmet in reply to Frank77]

You’re welcome. I’d like people to feel comfortable sharing this story so expectations can be better set.

[Cherylclaire Forum Support]

Hey, GGourmet ! What a wonderful story.

I was told that I had IBS in my mid 20's and had my tonsils out (finally) when in my early 20's.

Apart from some gluey Fibrogel sachets, I can't remember any further advice or treatment for the IBS. I heard later that it is a lifelong condition -from the people doing the SIBO test when I was 59.

The "removal of tonsils" issue certainly went through phases, so my massive tonsils only got removed on retirement of previous GP, despite repetitive on/off tonsilitis from childhood onward.

Love that you feel 25 at 50 - but so sorry it has taken you so long to get there !

I'm off to look up Vasovagus and global transient amnesia.

[Forensic6]

I developed vitamin B12 deficiency, probably, it is now thought, as a result of taking a proton pump inhibitor drug (omeprazole) for hiatus hernia symptoms, over a long period, daily from 1996. I developed, after 5 or 6 years, impaired sensation in my feet then in my hands and with increasing loss of balance. I was diagnosed as having sensory neuropathy (2004). My serum B12 was within the lab. normal range and so, mistakingly as it turned out, It was said that i did not have B12 deficiency. The cause of the neuropathy was unknown, "This is a quite common situation", they said.

I slowly deteriorated over the years. On one of my annual follow-ups (2018) a blood test showed megaloblasts (excessively large red cells) which occur with B12 deficiency. My serum B12, was at the low end, but still within the lab. normal range.

To cut a long story short, it was found that medical research had shown, some years earlier, that the serum B12 does not reflect the B12 available to the body for tissue repair. The only real test of deficiency is to give vitamin B12 supplements and observe the body's reaction.

Thus, since 2019, I have been on daily oral B12 supplements (2mg per day). Like others in my position I have rapidly deteriorated, becoming more numb, very unbalanced in walking , suffer brain fogs, visual disturbance, impaired memory etc. I have yet to improve. I am grateful, therefore, to GGourmet for his encouragement.

I was seen by some 17 doctors over this whole period. None made the correct diagnosis. They all, incorrectly, relied on the serum B12 finding. It is my belief that the drug firms should give a detailed warning about about this problem, not only on the patient information leaflet but on other information they publish. At present, they do not.

[Sleepybunny]

Always great to hear a story of recovery.

I was ill for many years (over 15) with typical symptoms of B12 deficiency including many neurological symptoms but apart from one set of loading doses could not get treatment for many years from NHS as B12 results were well within range.

I kept asking GPs and specialists if it could be B12 deficiency, wrote letters with research and info on B12 but instead of being treated got stuck with labels such as hypochondria, pyschosomatic, depression, ME/CFS etc etc.

When I realised that if I didn't get treatment, I was headed for dementia and spinal damage I decided to self treat. I already had dementia type symptoms and pins and needles in my spine. It took weeks even months to see any improvement then amazingly I realised that some of the neuro symptoms had disappeared and I was less fatigued and slow improvements continued.

These days I have a life that I can enjoy although not the one I expected...I think I have some permanent damage due to the length of time I was untreated.