Well! A very positive outcome from today's appointment with a new doctor, I was very stressed and upset before the appointment due to all the frustration dealing with previous doctors. I printed the documents and links Pat sent me and went in only to find I was supposed to be seeing him at one of the other practices. I was able to use an office and do a telephone appointment! which then meant I couldn't hand him the papers. Anyway!!! Amazing outcome... The dr has PA!!!!! He told me he lives with neurological problems exhaustion etc and that having been unable to work for a few years he is now working 3 days a week and has to go home to sleep after 4 hours. He told me he saw 3 neurologists during the time he was not working and they were useless. Told him he should be okay when he wasn't. When I told him I had cried often with frustration he said he had many times he had been in bed crying. He has made a double app for me to see him next Friday !!!
wow! My new doctor has PA himself!! - Pernicious Anaemi...
wow! My new doctor has PA himself!!
Alleluia!!! Ring the bells!!!
🤗🤗🤗🤗🤗
YES!!!!!I now have hope x
This was a story that made me smile. However, I would be deeply concerned by his lack of real understanding and limited progress in his own health.
I rejected big pharma three years ago and did hundreds if not thousands of hours of research. I have turned my poor health around in just over 2.5 years. No exhaustion for me, in fact i feel like a caged gorrilla.
Please define caged gorilla lol? I think the fact he also was dealing with PTS and a breakdown may have slowed his recovery. I am interested to hear more of his health journey. I will post after our next appointment.I am really hoping he can short cut me to the right people neurologist tests etc I'm also very interested to know what methods you are using for yourself having researched as extensively as you have .
I have so much energy now. I am decorating peoples houses for free as I need to do something 
Ok! Now I really want to hear your secret to your success lol!!😀👍
You have to accept that modern medicine and our modern life is actually making us all sick, which is a hard pill to swallow for most people. I look back at my ignorance and blind acceptance of 'medicine' and feel like a complete lemon.
For most people they cannot accept this at all. Our programming has been so powerful, thus most cannot accept different theories or admit they have been misled.
Hey!! I'm hearing you! I am totally seeing the influence of big pharmacutical companies involvement in the manipulation and control of how diseases like this are dealt with. No money in vitamins ! My previous doctor doesnt want me having regular b12 to treat my PA even though he reiterated the fact it was harmless, but prescribed me 300 gabapentin!. and told me I could take up to 3600mg of those aahhh!!! He went on to write to a Neurologist toaskhim to state how many b12 inj I should be having. He asked ifthe question was formeor was it patient driven! (his words) and said to tell me Icould have one b12 ij two monthly! I was currently on two aday as I was fighting covid as well as all my peripheral neuropathy etc .I read on a medical site about nerve damage and pain treatment. No mention of regular b12 for treatment of pernicious anaemia apart from the usual 3 monthly inj. But what I noticed was as they laid outthe possible progression of the disease they pointed out the choice of drugs you would be needing to take. Every sympton had a drug. The story ended with splints walkers etc possibly needed and continued on to heart meds b- blockers etc and then possibly death by heart arrhythmia and possible death!!!! aaahhh, soo painfully obvious and infuriating.
Good.I saw a neurologist for migraines at 5he time.
Hd too had b12 deficiency and couldn't cope on the NHS 3 monthly regimes here.
He wrote a letter to G.p suggesting to stay on 2 weekly b12 injections 💉
I also saw 3 neurologists.
All different theories.
Thus one took a self interest and read every 'paper' on b12 .
He said severely lacking research and no evidence of why frequency set .
Also said no evidence of b12 tablets working for at least 90% .
Told me to jerp b12 levels high .
First reassurance I ever got from a medic .
Interesting isn't it? And yes! you wonder how they come to the conclusion as to who should have what as far as b12. And what is their problem with b12??Just can't work it out. x
Lack of trainingUnclear guidelines
Or not not reading around them.
Fear of over dosing with causing cancer .
Again facts in a muddle .
I personally have seen 30 + medics
From nurses Gps neurologists
Probably more .
3 have had an open mind !! But no training or expertise on B12
Wow!It's a varitible minefield alright. That must have been very emotionally stressful on you. I'm early days on this road, but believe I have had it to a degree for decades x
Yes it at least takes a few years to deplete our liver stores .You then cannot ignore the symptoms
Amazing. A big hurrah - the best doctors are the ones who have the condition themselves, are willing to listen and/or admit that we know more than them.
I will do 3 back flips in the pool. 🐳
Nawww!!! Thank you Narwhal10 Please do a few of them for me lol x
😘
Hi,
I'm sorry to hear your doctor has PA but pleased that this means he'll understand what you're going through.
Does your doctor know about these ?
1) PAS website has a page for health professionals. It is free for health professionals to join PAS as associate members and I think this applies to doctors not in UK. Some info on page may be specific to UK.
pernicious-anaemia-society....
PAS Contact Details
pernicious-anaemia-society....
PAS membership is open worldwide.
pernicious-anaemia-society....
2) Club B12
Club B12 is a worldwide group of researchers and doctors who are looking into B12.
They have regular zoom meetings and a conference in UK September 2023.
Maybe your doctor would like to join them.
3) A good B12 article to pass to doctors.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
I'm not medically trained.
Thank you sleepy bunny! I will definitely tell him about these links. He has been through a lot a could tell. He had also had a nervous break down and PTS. He felt he could be open and volnable and thats why I feel I can trust he will also help me He showed his humanness!x
your doctor could join the Pernicious Anaemia Society as a health care professsional, we'd love more GPs to be involved, of course when he feels up to it healthwise!
Can doctors join from other countries besides UK?
yes indeed, we have members already from various countries including health care professionals doctors, nurses, midwives, clinical practitioners etc
That's fantastic to know! x
My Mother had P.A.
After some years her GP told her she needed no more B12 injections!!!
The result was that my Mother developed stomach cancer. I had no proof it was due to lack of B12 but I believe it was.
I have just read the following:-
nhs.uk/conditions/vitamin-b...
Awww shaws! That is so sad to hear! There seems to be a risk factor of cancer with this condition.It would be very sad if that was the case. I am sorry to hear this x
My new GP has told me that I can have as many P,A, injections as I feel I need, so I' ve decided on a monthly B12.
I now have had several.
On I am SO pleased and relieved for you, I feel quite emotional. Sorry that this gp had to find the truth by having P.A., hope (when he is able to) he spreads the word.
Yes! Sounds like he has been through a rough time He was a very nice man x
Wow!! Sounds like you will be the one saving him! 👏👏 Best wishes for Friday 🥰
Thank you Jade x I will let you know how it goes xx
How wonderful for you to find an empathetic professional, it's so rare. My doctors and specialists here in France are the same (but not PA sufferers!) and it makes all the difference. Good luck in your search for decent treatment.
That is fantastic Bren. Many years ago I had a doc whose Mum had ME. I was looked after by him at a time when others were being told “it’s in your head”. It makes such a difference x
I'm happy to hear you had someone like that to validate you. x And yes! It makes all the difference!
You are so lucky ❤️👏
Thats what we need a few more unwell doctors. People who actually have lived experience.
That's amazing......helps us feel like we are not nuts.
Can I move there? To New Zealand!
wow! You’ve struck gold! Poor Dr but so glad for you x
Wow!!! Thank you so much for sharing this - This is so validating and hopeful for us with PA!!
....and right here is the research we would all like to see:
1) How many GPs and other medical professionals have B12 deficiency ?
2) How many of those are able to function on the advised regime ?
3) Of those who can't, what frequency of B12 injections do they need ?
4) Is this something they have discussed with their own GP, their employees and work colleagues ?
5) If so, has this altered how B12 deficiency is viewed and treated by surgery/hospital for other patients ?
6) Have contractual changes been made by employees to enable them to continue in their current job ?
7) If this is something they have felt unable to discuss with GP/employees/colleagues: why is that ?
8) Did they get a given cause for their B12 deficiency- a diagnosis - and how long did that take ?
I am delighted that you are now being seen by someone who has an understanding of your condition, although awful that this is because of having it himself. This GP has done well to get back to work on an adapted timetable - one you'd really want to keep - and I hope that he is able to get improvements. For both of you !
They are great questions you have put together Cherylclaire! All of which I would be very interested to know the answers too also. I was surprised to hear that he had come up against similar problems with the 3 Neurologists he had see as we have, and shared our frustrations.x
My own GP sent me to three gastroenterologists, as she was working hard to find an answer for me, only to be told three times : IBS. The professional mask slipped momentarily...and I detected a raised eyebrow.
As for your new GP, it must have been very disheartening professionally to find out those that he'd put faith in for referrals, believing in their reports, etc, for years can let you down so badly.
Nothing personal, then !
I don't understand what is going on out there! Its so worrying!
Inaccessibility by distancing - but not confined to the NHS by any means !
After reading some of your earlier posts, and being so horrified by your previous GP's hostile attitude and downright cruelty, I'm so glad to hear you've found a doctor with understanding and empathy. But how telling that it's only because he has the condition himself, not because of his education and training. I hope you (and he!) are now getting the care and treatment you NEED and DESERVE?
Thank you! Yes! Empathy came from experience with this new doctor. He is living it so I realzed that I did not need to go into the details of how I feel. He just gives me a smile and nods his head when I say that I believe the so called medical professionals are not going to help us. He is a great support to me and organises any blood tests etc EOD b12 and is open to hearing anything new I discover in regards to PA. Thats a great help for me. He shares a little of his struggles and how he best deals with it. At least I know he understands and that is the biggest help.
Isn't it amazing what a huge difference it makes to be heard and understood. Such a relief for you...And hope your lovely GP might get involved with clubB12 in the future and share his experiences?
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