That really rings bells with me. Anger is sometimes my fuel too, but I manage it more wisely than I once could. I am so pleased that you have made and continue to make improvements. I am definitely not done yet. Best wishes
Completely wonderful and hard hitting at the same time. It so resonates with me - and I find this important as it gives me a little bit of "permission" to be myself, knowing that I'm not alone in my daily struggles. Thank you!
Just shows what SI has done for you - fantastic! Well done! 😃 xx
It took a long time to reverse this downward spiral.Possible though slow.
Make sure you get your treatment ringfenced once and for all.
If they believe that there is something else going on with you, they should have been pulling out all the stops to find out what - find it and then treat it.
Thank you Cherylclaire . Wonderfully put . It’s so hard to deal with the emotions that are generated by the treatment one gets from GPs if ( as in my case) the once every 3 monthly jab is insufficient. Your poem has brought it all back . The combination of anger and sadness and frustration is so potent . I’ll never forget it . I could not believe that i was living in the U.K. , which I’d always thought was a civilised country . It was , and still is, when i read on this forum that this medical mindset still prevails , a terrible nightmare .
To be that ill, and keep having to convince over and over.
Why the alarm over high serum B12 - yet none about hair/teeth/word/memory/concentration/job loss ? Makes no sense to me.
I was frightened that I wasn't going to stop deteriorating, more frightened that no-one who could help me was going to !
Yes, nightmare.
I still keep daily records, still take photos of visible symptoms at their worst - in case anyone shows an interest, finds a pattern, finds a solution one day - but most of all, in case anyone disbelieves me.
Sometimes I feel that the photos are for me: is this anyone's idea of "normal " ? Keep checking.
It really isn't normal - not the sore, split corners of my mouth, not the grey -coated tongue with red burning edges, not the yellow-grey skin, not the hair-loss, not the hamsterface. Not any of the singularly trivial everyday symptoms that make me not me anymore.
Can B12 deficiency affect your teeth ? Of course it can. It affects everything. Teeth, gums, hair, eyes, nails, skin: all visible, but who is looking ?
My ENT consultant agreed with me about haptocorrin: if your saliva glands are infected because your saliva ducts are impacted, how can haptocorrin be produced ? If not produced, what is protecting your extrinsic factor B12 from stomach acid ?
In other words, how can you get any useful B12 from your food/ from tablets etc. ?
It also resonates with me. I’ve come a long way but still struggle to stand in a queue, I’ve sat on pavements and bus stops as my legs give way. At times, I get so exhausted, my body aches and I want to cry but don’t. I sleep on my sofa as I can’t limp to bed.
Recently, I had my contraceptive implant changed by a lovely female doctor. She took my medical history and was flabbergasted when I said that I was practically bed bound for 6 months. I offered, it gave me opportunity to learn (even with eye tremors) and said my temperament is introversion (a self-confessed nerd). I went on and on about PA/vitamin B12 deficiency, she asked ‘What had changed ?’ regarding my social skills.
I smiled under my mask, and shrugged. Nothing, I thought, unbeknownst to most, introverts will talk at great length on subjects they are deeply passionate about, wishing to educate and make others understand. I take every opportunity.
When the doctor had trouble locating my old implant as the ‘white dots’ on my skin are also a sign of where it’s located, I told her, that’s vitiligo. Also associated with autoimmune diseases. I’ve got legs like a cheetah.
I’ve got those white dots all over my legs too , but nowhere else . Being white skinned they hardly show at all . Also I’m not a sun-bather, and tanned skin would make them much more apparent . So I can give them a name now . I wonder if it’s common amongst P.A. patients .
Hi Narwhal10 and wedgewood I remember once seeing a list of symptoms (obviously not an NHS one) that included white spots/patches on forearms -and thinking "I've got those".
Never thought anything of them, just part of me.
My mum had vitiligo - started from a reaction to a childhood vaccination (she couldn't remember what for) and spread from the top of her arm gradually over the years to cover her shoulder and part of her chest and back. She also has psoriasis -again patches of skin affected. In later years, the patches on her legs became ulcers.
Treated effectively with Manuka honey- but as fast as they were being cleared up, more would appear.
Auto-immune reactions.
Legs like a cheetah : lovely image. Wouldn't that be great ?
I think it is. I have it too, chest, jaw, neck, head (B12 problem, unidentified) and a neurologist told me that it would be due to my extensive family history of PA and B12D. My father has developed brown patches on the skin so I was doing some reading yesterday and found suggestion that cutaneous pigmentary disorders occur with B12D - darker patches seeming to be more common than vitiligo, but both happening ncbi.nlm.nih.gov/labs/pmc/a...
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GP frustration - rant ahead!
Nasty experience with GP
this is what GP's think of us. 
Self injecting prescribed by GP? 
GP stopped B12 injections 
