In 1989 despite having two normal lumbar punctures I was diagnosed with ms then in 2000 I was diagnosed with b12 deficiency. The professor who diagnosed me was conducting diagnostic saliva test. It took almost 6yrs and over 70 swabs to diagnose me with this condition. The doctors here in Australia still belieive I have ms,I know they are wrong. After spending almost 2yrs in a nursing home with those with ms I realised only those with PA had bowel dysfunctions and eyesight problems. All these people had ancestors who died from typhood.
At the moment I am taking sublingual active b12,which is giving me dozens of amazing good affects such as alot of my spasims have now disappeared. I have been taking this sublingual spray for 3yrs and hope thjings would of happened a hell of alot quicker. I am now completely disabled,using a wheelchair and legally blind. Anyone with similiar experiences please contact me.
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tracyxyz
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Have you ever been tested for an under active thyroid gland. A lot of the symptoms of pernicious anaemia can be very similar to the symptoms felt by those with an under active thyroid.
I have both and can tell the very subtle differences between them, now I am being treated successfully for my thyroid gland. I had problems with my eyesight and bowels, as a lot of people do, caused by an under active thyroid gland.
I found Thyroiduk website invaluable, in helping me get the right treatment for me.
The other thing I'm finding though is that I need my b12 more regular than every 3 months.
I know my story is not similar, but just wondered if your thyroid has been considered and wanted to wish you well.
Hey Mcx thankyou for your reply it was lovley. About 3 months after starting to take b12 I amazingly got a sun bronze, Not a sun tan a sun bronze just like every Australian used to have. This is how I know it is PA. I know what caused the disease and why, the number of people wish misdiagnosis is amazing even though doctors seem to be hiding from it as they do not wish to have a misdiagnosis on their records, the doctor will lye as they are more worried about their records not your life, do you know if it is possible to die from PA? regards Tracy
Yes I do realise you can die from PA and that GPs don't know enough about this or thyroid problems.
I've been told I can't have my injections more frequently than 8 weeks without them reviewing it, because I could end up with neurological problems, but they don't mention the nerve damage I could have if I'm not getting enough b12!
Hi I do understand what you are going through, I went through 2 years of comings and goings to Cranfield Uni to take part in a B12 survey, which was to prove or disprove that patients need their b12 injections earlier than 8weeks. I now have my complete dose every 4weeks, I feel amazing but sadly even this starts to wear off, before the 4 weeks are up, although I do have Fibromyalgia as well and a bowel proplem(? cause) I don't know if this would have an effect on my B12,
You could either do some research of your own, maybe see if near you there is someone doing a trial, have you been on the PA website that is where I found out they were doing trials for B12, It was only going on this and getting a letter from the Professor who confirmed by his trials that I did need B12 more frequently and apparently they are writing a paper on this, stating that the B12 management needs to be updated and patients need to be managed better.
I hope I have helped you in some small way, if you have any quetions please don't hesitate to ask, you are not on your own with this, apparently there are loads of us hahaha. Thats because we are unique!!!
hi,i have only just seen this. i was refused b12 any earlier,i did eventually get them ever y 4weeks and have never felt better. My neurologist said my migraines had nothing to do with pa. They have all but disappeared since,i also have an underactive thyroid. My point to the doctor was to have a trial at having them every four weeks,to see if there was a difference,,,thank goodness i did. Good Luck to anyone having to go through this,you seem to have to fight for it!
hi traceyxyz, the only advice i can give you right now is to go online and search PERNICIOUS ANEMIA SOCIETY ORG, THEY ARE A CHARITY BASED IN WALES AND HELP PEOPLE THROUGHOUT THE WORLD EITHER DIAGNOSED OR NON DIAGNOSED. i HAVE RECENTLY FOUND OUT i HAVE PA AFTER MANY YEARS OF SUffERING. THIS SITE IS AMAZING AND THE SUPPORT YOU GET IS OUT OFF THIS WORLD .THEY WILL HELP YOU, JUST GO ON AND READ THE STORIES SO MANY PEOPLE ARE LIKE YOURSELF. they can help you as members seem to know a lot more than what doctors do. thanks my journey
Hi Everyone, I have a under active thyroid, PA and ME ( Chronic Fatique). I work 3 days a week, but have been off work for the last month, my GP says its my ME that is causing the pains in my knees, legs, nite sweats and tiredness but i think its my PA. I have my injections every 10 weeks and 2 months ago after a full blood count he put me on folic acid.
I cant seem to cope with anything at the moment, i feel so depressed. I find my job too hard for me, would love to give up but cant afford too. I see my GP again on Friday this week, im going to ask him to refer me to a neurologist to see if i have nerve damage. I cant stand for long with the pain and some times i lose my balance. Anyone have the same problems??
Hi Tatoo. I have had PA for 15 years. I know for me it is the totally debilitating exhaustion that is the hardest thing to live with and the insomnia. I am waiting for a new set of bloods to be taken as I am attempting to have my 12 weekly jabs reduced to 8 weekly to see if that helps me. I have fallen over 3 times in the last six months - one time falling out of the shower and cracking my head on the sink, another falling over in a car park and lastly loosing balance whilst just walking. Living with PA can be so depressing. But take heart, you are not alone. Do what you can, when you can. I really hope your doctor does everything he can to help you. The Pernicious Anaemia society are doing all they can to educate and make changes.
Hi, weeluvpa, and MCMC, and anybody else who finds they cannot last three months between B12 injections: I would like to call your and your doctors' attention to the British National Formulary wording (BNF September 2011) which is
"Pernicious anaemia and and otyhrt macrocytic anaemias without neurological involvement , initially 1mg 3 times a week for 2 weeks then 1mg every 3 months.
"Pernicious anaemia and other macrocytic anaemias with neurological involvement , initially 1mg on alternate days until not further improvement then 1mg every 2 months."
Falling over and losing balance while just walking IS neurological involvement, as are many other symptoms. You can read the BNF for yourself, just go to the BNF site, bnf.org, register as directed and use the halfhour you then get to access Section 9.1.2 Drugs used in megaloblastic anaemias. Print it out and challenge your doctor who is porobably misinterpreting the BNF guidelines. Hope this helps.
Im sorry its taken so long to answer but I have only just joined the PA society, I too have alot of pains in my knees, legs, and hands but the doctor said it was nothing, I have had an underactive thyroid for 18 years and only recently has my levels gone from 0.8 to 17.16 since being diagosed with PA, They dont know what to do so they hav uped my thyroid dose from 125mcg to 150mcg and I have to have another blood test in 3 weeks, I dont know what is going on with me I seem to be all out of whack and I feel tired, lethargic, and I have put on a lot of weight but they say this could be because of my thyroid, they dont give me an definitive answers and I come back from the doctors more confused then when I went, I wish I knew what was going on. I too have trouble with my balance. I hope you get things sorted.
I would like to speak to a person who is diagnosed with ms residing in australia preferrably in queensland. I would really appreciate this.
I have been diagnosed after having been told I had depression, my gp never picked up the link between underactive thyroid' vitiligo etc l am currently managing 4 days at work but worry that if I go to 5 l will go backwards I am also suffering with vertigo and would like to know what the future will hold?
hi i have had pa for about 11 years. went 6 years undiagnosed. on 3 monthly b12 injections .i am okay for 2 months but a total wreck for i month. my doctor refuses more frequent injections. i have numbness in my hands and feet and feel exhausted breathless no energy anyone suggest anything
You could try sublingual b12 tablets that you chew, or a spray. Some of it may get through because it is absorbed in the mouth not the stomach. You can get these on the internet. I got mine on a popular Internet shopping site beginning with a and ending with n. They are called jarrow formulas methyl b12.
I think the injection does stuff all as it only has a very small amount of active b12. You are deficient in active b12. You should be taking sub lingual active b12. I use Bio Ceuticals B12 Liquid sublingual spray and have had some amazing results. Regards Tracy
redroseart, if you're in Britain then my reply to weeluvpa and MCMC then my UK specific info must apply to you as you have neurological involvement exempified by the numbness in hands and feet. What is wrong with these doctors, can't they read? Please consult the online BNF and take a print -out to him/her and demand you be treated in accordance with the info from BNF. I truly hope this helps you. I wish you all the best, I have suffered too like you.
Mention Addisons Disease to your endo/ DR It causes 'bronze' skin, darkening gums, it is autoimmune and u need checking if u feel so ill and have a colour change.
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