I am in shock!: On top of everything... - Pernicious Anaemi...

Pernicious Anaemia Society

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I am in shock!

Nonameme profile image
5 Replies

On top of everything else I received the results of a recent scan.

For the longest time I have suffered with my back and was diagnosed but never treated for cervical spondylitis many many years ago

As the pain increased and affected me more each day my requests were denied. All things were usually put down to Diabetes.

I now only have Cocodamol and Gabapentin for pain which is totally ineffective and I keep getting told my muscles are weak due to lack of use. I could hit them I bet they sat in their chairs all day are less active than me I am a carer for my sister and we have no help at all I do everything thing.

I am well aware I am classed

as a hypochondriac.

Anyway back to my scan result.

RRM OUTCOME

Haemangiomas in T9 vertebrae. Stable in the last five years.

I never ever heard of these and a quick research has left me reeling!

I would really like some information and advice please

I know this is the wrong group but I feel I know you guys and you know me😳.

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Nonameme profile image
Nonameme
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5 Replies
Jillymo profile image
Jillymo

Nonameme,

Strange how you should post about hemangiomas. I put a post on the Hughes sight yesterday because I have them too. I have five around my lower spine spotted whilst having an MRI.

At the age of 16 one appeared on my right side which was removed. I now have them on my scalp, chest and some small ones appearing on my face. I were recently told cherry hemangiomas. Apparently they are harmless.

Nonameme profile image
Nonameme in reply toJillymo

Thanks for that seems we all move along the same trajectory with differing pathways.

One of the first things I read about this said they were benign which evocked a huge sigh of relief but reading on when they mentioned ‘they ‘ have been stable for the past 5 years I shouted out loud ‘oh no they have not’ good job I was home alone’😳.

I have complained about back pain and movement problems for well over10 years and have a mobility scooter ,crutches and canes which I use daily. GPs comment was throw them away and exercise more. Even when I had a stress fracture and was sent to consultant because Xray shows nothing What a surprise when he turned out to be one of the GPs at my practice! So I think he tried a little harder and actually found the fracture on the Xray , now several weeks on. He said he would arrange for it to be followed up. That never happened and it was never mentioned again but pain continues to today.

Even now every time I mention back and leg pain Exercise or see physio or it’s all down to diabetes (leg and feet pain is always diabetic neuropathy. )

With regard to B12 result of 181(180-900)I seen on my notes After my letter of complaint , I have been given a low daily dose in tablet form. On notes but not on repeat and I have not actually been contacted. However had they checked my Notes these have been found to be ineffective and they badly affect my tummy.

Just goes from bad to worse. Had they checked my notes after loading dose and a further 4 injection a my B12 has plummeted test on test to where it was on test day. I want one more test prior to starting SI and talk to them no more as results will be useless.

Sleepybunny profile image
Sleepybunny in reply toNonameme

Hi,

Just wondered if you'd ever been checked for PA (Pernicious Anaemia) and Coeliac disease.

Both autoimmune diseases that can lead to B12 deficiency.

Might be worth joining and talking to PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

You can join without a PA diagnosis.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There is a PAS members helpline.

pernicious-anaemia-society....

There are PAS support groups in UK. Useful places to swap information.

pernicious-anaemia-society....

Lots of useful leaflets on PAS website.

pernicious-anaemia-society....

Coeliac UK have info on diagnosis of coeliac disease

coeliac.org.uk/information-...

"I have not actually been contacted. "

I found that often I had to do the chasing up...it shouldn't be this way but sadly it often is.

I left a lot of information in my replies on this thread.

Maybe you could read a bit every day over a week so it's not too tiring.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

Nonameme profile image
Nonameme in reply toSleepybunny

Thank you so much. For 2 years I suffered major bowel problems that firstly was not taken too seriously a few tests and by the time I had progressed to uncontrollable diorhea as much as 3+ times in the middle of a supermarket! but told ,deal with it and go away’

I went private and had more tests including colonoscopy done Results were inconclusive but he mentioned malabsorption, crones and Other similar problems and wrote to my GP to further investigate This was never done

A recent blood test showed b12 at 181 (180-900) normal no action required 2 years ago I had loading doses and four further over 12 months and gradually feeling worse over time so when these finished last year I requested that I continue with injection and was turned down flat

Through the past year my overall general health has been getting worse and in May I wrote an official complaint to GP Who until last week had not replied and it was well over the required 6 weeks and I mentioned this to receptionists and I then noticed on my notes a new prescription for b12 tablets appear on 18/7 but I have not been notified of this as yet

I am not gouging to bother with any more I am starting to read through your suggested reading and see how I an get an appointment with Cambridge and tarot from there so thank you so much and I will keep you informed along my journey

Sleepybunny profile image
Sleepybunny in reply toNonameme

A few links for those unhappy with treatment.

Apologies if I'm repeating things you've already read.

Letters to GP if unhappy with treatment

b12info.com/writing-to-your...

Some forum members have told their stories on Care Opinion website.

careopinion.org.uk/

Put "B12 deficiency" in search box on Care Opinion website to find other stories about people with B12 deficiency.

Thread about Patient Safety, has lots of links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

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