I’ve been plodding away in the background trying my best to get answers without going down too many invasive routes as it terrorises me.Everything bad for me started with a severe head jury after one of my many falls and sheer neglect with my injuries and no Investgations as to why it had happened in the first place bearing in mind I’d had numerous bouts of dizziness prior to the fall,they just said it was a bug.
I started off with HPylori causing my gut problems, had to endure investigation of colonoscopy and two biopsies were done which came back all clear,tested positive for HPylori had treatment twice as difficult this time to get rid of,then possible thyroid and adrenals issues ,got them ticked off out my head list sst tested etc and thankfully got pointed in this direction because my b12 levels were questionable,I then kept searching for reasons for symtoms and discovered I had pernicious anemia after a lot of private testing again,so managed to get gp to agree to loading doses and three monthly shots,no where near adequate as we all know so now self inject every other day.
I’m now still having tests done because I’m still not finding the answers or remedies that I need,my last text from gps said “as all your blood test results are normal no action necessary.”my b12 is not normal my folate is not normal my ferritin is sky high as is my cholesterol,I have to supplement my d to keep decent levels up as that was 35 at one point.
Everything is far from normal so I carry on paying private in pursuit of a diagnosis,Latest ultra sounds showed 2 biggish stones and they recommended ct scan I had this done 545 quid later and new report says three stones and now an umbilical hernia,none of this mentioned on previous scans,I had to pay to have the dexa scan done that consultant asked gp to do and he ignored 3 requests so again far from normal I have oesteopenia in spine and oesteoporosis in hips,apparently I should have been offered medication suggested by consultant to gp but nope got nothing. also no advice offered for pre diabetis blood test results,I’ve now asked for an mri scan to check for SACD via my private consultant because I have so much pain in my spine and numbness/tingling in fingers and toes and dredful carpal tunnel like pain in wrist and index finger at joint I can’t bend it or pick up cup most days. I’m just totally fed up and sick of being sick and I’m feeling sorry for myself.
I feel like I’m on a roundabout I can’t get off and I’m constantly self diagnosing and guessing next steps,why can’t these medics be proactive in getting us the help we need NOW instead of singular tests why can’t we have one scan that looks at everything, and the whole body,not just parts am I being too simplistic expecting this.I’ve changed gps due to house move and had first b12 shot with nurse and she told me I was the first patient she’d had in 20 years who’d mentioned intrinsic factor and she didn’t really know anything about b12 or p.a even though her elderly mother had it.20 years experience god help us I dread to think what the gp will be like.Sorry don’t mean to be negative but I’ve no one to talk to and it helps me to get this out of my headspace.x
You have a food sense of humour . Dont lose that. When you describe the nurses it made me smile ...
..well better than weeping.
We are older and wiser than many . Just need a medic with a bright mind to be interested.
I posted earlier with my Gps answer to my problems.
A neck massage. !! (Last contact in February) boy I wish it was.
I felt back to square one doing cawthorne pysio today. I'm not back at square one by any means. But have been trying very hard for over 2 years to get some life back i recognise. Another Gp suggestion.
To try serc . It may make matters worse it may help was what she said.
Unbelievable on such a trial and error basis .
Cherylclaire is right some specialist somewhere must have more answers. I hope your professor is a good one. Working through things.
Have a day off all vitamins . All reading of what or who to try and see next.
Ni cooking . No cleaning. No pretending to be 'normal' dont even bother to get dressed if you donr feel like it .
Sit and eat crisps or whatever.
I bought my mum as 91 soon some French fancies iced cakes as soft. Akso plaice .
On an impulse sat and had two (not even for me ) my goodness what a sugar hit lol
It was in response to her getting her b12 injection yesterday and I said if they leave the box of 4 ampoles behind that expire this month I will have them. A new lot had been sent by ' magic' apparently. (Not by me organising it)
They were left behind but she put them in the bin!!
So I put her cake in my mouth . They were good. 🤣so no answers but plenty of ideas to have a day off trying to sort stuff. It's hard work.
Goodness I thought I'd lost the whole lot . The screen went blank. I will stop waffling but totally get where you are coming from.
Thank you sleepy bunny.my ferritin was 599 at last count steadily climbing and they’ve did nothing about it,I’ve had haemochromotosis tested was negative.I had an mri scan done then had it repeated as I have raised lymph nodes near the caecum but when I had second mri done it showed no significant changes in size so they’ve left alone,it could be a number of things causing the high ferritin ie raised lymph nodes or kidney stones or even gluten because these all cause inflammation but it’s impossible to get any action from them or discussion.I’ve been trying to focus on solving things in a step by step way but they don’t make it easy,I’ve seen so many consultants I’ve lost count now,no joined up thinking and I’m having to work out next steps every single time and then ask for either relevant scans or investigations Thats why I get so worn down.xx
I’m lucky in that I have the professor in oxford trying his best alongside me but the problem i have is he offers convention solutions ie statins ,bone drugs etc and I don’t want those things because I know the problems most of these drugs cause and as you know with p.a it’s hard enough getting through the day without more rubbish going into our bodies so I try and keep things as natural and as non invasive as I can get away with.
He is going to refer me for a spine mri at my request so I can check for SACD so at least he gets things moving for me.
Good to hear from you and hear your feelings - it helps the rest of us not feel so alone, even though it makes the realisation of how broken the system is, more concrete.
You have my deep sympathy.
A month ago my (ex) husband drunk himself nearly to the point of death and, despite years of his severe physical and mental abuse, only I was available to take him to hospital.
He had every test and scan going! After a weekend in hospital to sober up he was sent home with a clean bill of health, except for the alcohol poisoning.
The several extra unplanned hours awake on the day I took him in and extra time afterwards heading him in the right direction have really taken their toll on me.
Oh goodness the irony of it all - here we are desperately trying to do everything to keep going and can't get the tests and help we need!
Keep strong with all of us by your side and do all you can to look after yourself - with good diet and gentle walking exercise being the critical basis for your further research.
So sad to hear that Denise what a strain that would have put on you people don't get how things like that really do drain every bit of strength we have in us and your right it’ll take you ages to recover from that stress.my dad was an alcoholic and we had him living with us when we first moved down to England because no one else would help him,even after all the years of abuse he’d given my mum and all the batterings we still loved him and had that sense of duty to him so I know what you mean,you know how much it’ll hurt you but you just can’t desert them,eventually we had to put him in care because he had dementia and was showing violent outbursts to my children and I couldn’t have that.P.A and b12 deficiency is such a hard thing to deal with I was due my shot yesterday and didn’t do it because I felt so beaten and I dread doing it so don’t let any gp even hint at placebo effect with me none of us want to do this day in and day out do we.
On a positive note I got an email at 2am this morning saying I’d gotten my blue badge back, I’m so thankful for that,it’ll help so much as I can’t live without my car. I’d never get out anywhere and I do struggle with shopping now as there’s no collect by car ,if I have to park far away it’s a nightmare for me and I hate online food shopping.
Better start to the day today.thank you and I hope you have a better weekend.xx
Glad about the blue badge. My daughter having been denied PIp benefit did get a blue badge She uses a wheelchair so very helpful.
On the last trip with her before I got ill I could not find a lower floor space to park. ( no blue badge then(
So after trying 3 car parks had to go into an an upper level. No lift!! On that level. It got quite ridiculous as alot of the trips were hospital appointments .
I had to run at the wheelchair i get it up a slope ( only meant for cars so dangerous) it was so physically wearing . She knew it as well as me but being upright for too long she passes out
. Blue badges so important to get out and about. Many more spaces now too.
That’s awful she certainly could do with getting pip and making her life more tolerable under the circumstances it’s so wrong the way these benefits are decided,I used to get incapacity benefit after I’d had a bad accident on my back at work.the particularly vindictive gp I had then decided because I would not go for intrusive investigations for bowels ( it actually turned out I’d HPylori ) that he would no longer write me sick notes so my only income was taken away at a critical time for me it was terrible of any gp to do that.
Yes it's disgusting. We did go to court and you could tell the judge despite awarding a few points . (Not enough) said not all conditions are covered in the present point scoring exercises. Not his words but that was the gist of it. She was in a wheelchair by then and no blue badge to park nearby. And I couldn't even get her through the heavy doors of the court. Had to ask a passer by. She was a full time secondary school english teacher. A trained Samaritan . Plenty of other things . To first have to leave work as they were going down the route of sacking . She hadnt enough years in the post for greater protection. Or unpaid absence
Union experience did me no good as an academy dosent have to follow normal rules so had to take union hat off and put mum hat back on. The head was harsh and cruel. one meeting with HR They treated her badly when she started to get ill. Even took the disabled toilet key back from her incase she passed out in there ?.?
She wasnt in a wheelchair then. B12 deficiency hadnt been diagnosed (the root of many problems)
Megaloblastic anamia severe folate deficiency ferritin 10 (other end of scale to you) The assessments for any benefit were making her more ill.
I did use CAB but in hindsight for any one reading its really best to let a charity see you through the whole process .
Now with a firm diagnosis from The National Hospital it may he different. I'm certainly not getting involved again . I'd rather pay.
There are charities and also some councils have paid staff to help people unable to work through illness get a benefit.
You can earn a little if its possible within this to survive . PIP works better with a mental health illness or arthritis that has more understanding.. Or a label. The system does not work and many able people can get it .
Many deserving get it .
Many needing it desperately do not. That saying if you have to be fit to be ill to get through the system comes to mind.
Many do not fit the criteria at all but clearly like my daughter unfit to work. She loved her job. To score zero points was very demeaning and truly upsetting and has a devastating psychological effect.
She paid into 'the system ' for many years. Did unpaid samaritan work. Unpaid community work.
In her time of need ???
There you go Thrones . All sorts coming g out from your needed rant.
Shocking Nackapan.I’m a hairdresser but I had to be one of the ones that got bloody carpal tunnel lol I couldn’t use my hand plus the brain fog put me in many awkward situations where I couldn’t remember the basic things when mixing colours etc I now know it was p.a that caused all these things,I’m amazed no one lost an ear although with my wobbling and dodgy arm that was always a possibility lol.😱💇
Goodness . Yes ironic you had the heart to help him. With such goodness I hope you soon pick up from the extra strain on your already stretched resources.
My friend did something very similar . A while ago now . Her ex. Also abusive was alone and dying of cancer.
"she didn’t really know anything about b12 or p.a "
Maybe at some point you could donate a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" to the GP surgery library so she could look it up?
The BNF treatment info in current edition book is out of date so I hope there is second edition soon. You might want to tuck a copy of up to date info in the book.
It continues to amaze me how much time, care and support is available here, often from people who are quite ill themselves, as well as struggling to put down their thoughts and make their words clear. On top of that, having to find the strength to provide care for other family members and help them to fight their cases.
So much to learn from here about the daily realities of people's lives: shame that trainee GPs don't have to research "impact evaluation" when learning about B12 deficiencies.
Might make them recognise the severity of this condition, and give them sufficient respect to push much much harder, on their patient's behalf, for a better long-term outcome.
You have earned the right to rant.
Some answers (and a French fancy or two) wouldn't go amiss either.
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Advice on folic acid
IFA negative, Low Active B12 - advice please. 
If I got an active b12 test done privately and it showed I was deficient, would my GP give me injections?
Is it possible to have pernicious anaemia with a B12 of 550? 
