Has anybody had there dna tested.
I question this as mine was double stranded DNA.
Now to family.... numerous family with b12. I believe this to be from mothers side. Gran, mother sister all crippled, all passed away, other sister dementia, legs swollen etc etc.
Mothers 5 brothers all died from abdominal aorta aneurysm
I'm just inquisitive as to where this all began. Probably to inquisitive for some !
Since we left the single European market on January 1st , we have had difficulties in obtaining our B12 ampoules from German online pharmacies .There is added paperwork for them , and some seem to think it’s not worth the trouble ( I don’t know if this is the only reason ) So we have had to set out and find new sources . I can say for certain that the following pharmacies are at present shipping B12 ampoules to the U.K, but some times they run out of stock, but restock quite quickly .
This site is only in German, so if you don’t read German , you will need to use Google Chrome for translation or some other translation app.
This site is available in English -You need to click on the American flag , top right on my iPad
Search for Rotexmedica b12 depot
These ampoules are the Hydroxocobalamin form of B12 , as used in the NHS .
You can use the Pharmeceutical reference numbers which appear on every pharmaceutical Item .
03862297 for packets of 10 + ampoules
03862305 for 10 x 10 packets i.e. 100 ampoules— Usually the cheapest way to buy them . The use -by date is at least 2 years. To be kept at a temperature of 25 Celsius or less, and in the dark.
I find it advantageous to register and use PayPal to pay . Usually takes about 4 days to arrive.
Sorry Sallyanni . I somehow managed to send the post to the wrong person !
Yes, I have had my DNA tested three times. Everybody has double stranded DNA (it is, famously, a double helix). But my DNA testing was done to help with genealogy. Nothing was useful as far as health is concerened.
Thanks for that, it also came back that id had glandular fever h.b. virus?. Though not active.
Yes, I was referred by haematology to Adult Inherited Metabolic Diseases who looked at my DNA because my MMA was raised despite frequent B12 injections. My family history is of autoimmune conditions (Grave's disease, vitiligo, psoriasis) and autism in my sisters' children. No diagnoses of PA, but a cousin with B12 deficiency who is treated with an injection every 6 weeks. I need more frequent treatment than this to control my symptoms adequately, which is why I now self inject.
Fairly early on, my GP diagnosed functional B12 deficiency because of raised MMA and poor response to B12 injections, which was confirmed at the time by the testing laboratory.
Unfortunately, nothing in my DNA regarding MMA was found that might explain this. Very supportive team that were sorry they could not help, knew about Martyn Hooper and current research, and advised that I join the Pernicious Anaemia Society !
Well just been for blood test, and they manage to get blood (after using hot water bottle on arm and lots of water)😀I have now told them I cannot continue like this, and went over my history, she could not believe
What I had gone through. She is now going to make sure I get the appropriate treatment and a good Doctor who has more empathy. I also told her that I will get ampoules from Germany.
So fingers crossed .
Hidden - I'm so glad you are getting listened to !
I have the opposite problem with blood- used to like giving blood as I felt so much better after, when I had less ! I once had an operation on my shoulder which was supposed to take about an hour/ hour and a half. When I was still down there three and a half hours later, partner was just told "Well, she is a bit of a bleeder !"Rude.
Well done; it's hard work sometimes, getting help.
Well your a bleeder I'm a stone next time you can take my place👍
Hi, I'm concerned about your family history of ruptured AAA. As well as your other issues, you need to see a Vascular Consultant about your abdominal aorta. You would probably get an echo scan done first. If your aorta is found then to be at all enlarged, you should ask for a CT of your whole aorta. You must also get a genetic test as you clearly have a genetic link with your aorta. Properly managed, your risk is limited, but you need regular scanning and review. Good luck
Thanks for your response, Mum was given all clear, my brothers given all clear, was informed it's more likely in males.
Many in family have white finger, and find trouble giving blood so yes we have circulation problems.
I will mention this when I see Doctor.
I hadn't had any trouble with white finger when my b12 was high, it's only since they stopped b12 injections, symptoms returned. Now having injection again symptoms gone.
Hi, have you been checked for a connective tissue disease? Is anyone in your family loose jointed, hyper mobile or double jointed? It may be ehlers danlos syndrome which is a connective tissue disease that is genetic. All of the issues in your family, including b12 def is often found in Eds.
Not that I'm aware of, I was not even aware my eldest sister had white finger, my cousin told me that when theyWere young and were playing her fingers always went white. My sister is 20 Years older than me, and got married when I was One, so not really close and she lives
MIles and Miles away. I would phone, but as she has dementia it's very difficult to hold a conversation.
Her white finger may be raynauds which is also commonly associated with ehlers danlos.
Yes that's right diagnosed in my teens. My eldest Sister was rushed to hospital about twenty years ago, suspected heart problems. HOspital phoned me to see if there was history if the family, I told them about AAA, they tested her and found Kidney Stones.
But no AAA. They stopped the medication she was on
Presumably heart medication, and she had the Kidney Stones removed.
When I first had B12 Deficiency I has severe chest pains,
Had scans etc, all they noticed was a valve collapsed now and again. SInce then had another Scan all OK, but I was
Low in B12. Not on Bloodpressure tablets only medication is B12. BLoodpressure fine at present..
Are there any medical guidelines specifically relating to treatment for functional B12 deficiency?
Where can I buy safe Methyl B12 for UK use? 
B12 - An "important nutrient for genetic stability, DNA repair, carcinogenesis, and cancer therapy"
B12 Mean Corpuscular Volume
Can it be PA when the Dr says no and the results are inconclusive? 
