I was diagnosed with PA around 4/5 years ago now. Since then I've been getting b12 injections every 3 months - though normally always feel tired 4weeks or so before then.
Other than that, and a severe bout of depression (unconnected to the PA) I've been okay.
Been feeling pretty bad for a few weeks now.
Like a constant shiver/tingling sensation on most of my body. Almost flu-like symptom
I went to see the doctor on Monday and she suspected a urine infection - though that came back clear.
I asked at the time if could be connected to the PA and brushed off pretty quickly (it wasn't this GP who diagnosed me with PA. He's since left the practice.)
I went back to see her again on Thursday as the feeling was/is getting more intense and this time she at least sent me for blood tests. Then yesterday afternoon I received a call from the practice asking me to make an appointment to come in and "discuss your blood results". No other info given. So I now need to wait until Monday and hope I get an appointment to find out what the results are.
Now, to at last, get to the point.
Has anyone else had similar symptoms that have been connected to the PA or vit B12 deficiency? Or is this likely just some sort of infection, as the doc first thought?
I know I should just wait until Monday and see what the results say, but paranoia about what it could be and being fobbed off if blood results are within so-called "norms" is starting to kick in, lol.
Thanks
James
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James_H
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Hi James_H If you have P.A and are having neurological symptoms make a list of them and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even restart you on loading doses "until there is no further improvement" and then every eight weeks according to the N.I.C.E guidelines below.
Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
Also ask to have your Folate level checked as this and B12 helps your iron to function properly and make red blood cells.
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.
With pernicious Anemia / subacute combined degeneration, You may be having symptom that seem unrelated, vision, heart changes, bladder infections, vertigo, restless leg, stuttering, twitching, numbness, lack of sensation in your private parts/ sexual dysfunction, memory loss, confusion, weakness, and on and on.
Do you have online access to your results? If so, you should be able to view them, and could post them here.
If you don't, ask the receptionists to organise this online access as this service is supposed to be provided now - Freedom of information etc. You'll need to sign a form for them to do this.
It's always worth asking for a print out of any results, to be honest. When a GP says 'All normal' or 'Within Range', it doesn't actually indicate that on the written report, I'm sorry to say.
You are entitled to a copy, although it seems some surgeries may charge, so if you have the online access, they're there at your fingertips
I've googled a wee bit about accessing my records.
Things might be a bit different in Scotland, where I am. I can't see anyway for me to see them online.
Seems I can get view them at the GPs practice for free, get a electronic copy for £10 or a hard copy for £50. But it can take up to 40 days to receive it after application.
I'll ask for a print out of the latest results on Monday. I don't see any reason why they'd be against that.
Hi James, am also in Scotland Our surgery does offer an online service but so far all I can do with this is order repeat prescriptions. I am also going to look into getting online access to test results, and will let you know how it goes (and if it is possible to get them). Good luck for Monday
In UK, my understanding is that people with B12 deficiency with neuro symptoms eg tingling, pins and needles, balance issues, memory problems, tinnitus plus other possible neuro symptoms should be get a loading injection every other day for as long as symptoms continue to get better (this could mean loading doses for weeks even months)then it's an injection every 2 months.
How many loading doses did you get when first diagnosed?
UK B12 treatment info
1) BNF British national Formulary Chapter 9 Section 1.2
As you have a confirmed diagnosis of PA, it may be worth joining PAS. They can sometimes intervene on behalf of PAS members who are struggling to get correct level of treatment.
B12 blogs
May be relevant stories on Martyn Hooper's blog about PA and B12 issues.
Yeah I get that feeling if I am having a low energy day. Feels like you 're coming down with a horrible cold or flu. I usually end up taking something like paracetamol or cocodamol to get through the day. I SI so if I have a few days of that feeling I end up taking another shot which usually sorts It out.
If you were eating a regular diet and still had B12 deficiency, then you have no intrinsic factor and need to take B12 sublingual or shots the rest of your life. Tingling is a sign your nerves are loosing their Milan sheath and you are experiencing nerve damage and maybe death of nerves. Get on B12 quickly as the longer it goes on the less likely the nerves are to heal. This can even cause brain damage. Every nerve in your body is affected.
They didn't even check my b12 levels in the "full" blood tests.
Apparently my iron levels are way too high though.
I now have a second load of bloods being taken later this morning, in which b12 etc will be tested, with the likelihood of needing a third set after these results are back.
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