Long standing PA -can I ask for blood tests?

[Doubleblank]

I don't know if once diagnosed with PA, I can ask for any tests on N.H.S., as new symptoms have appeared. Pins and needles and concentration/ confusion issues along with the tiredness. The pins and needles (down entire leg into foot and hand/fingers of a night)

Seeing Dr on Tuesday for result of ECG

If not, which test would you recommend getting done privately. Blue horizon have a range for both thyroid and B12(I have both) but think it may be related to B12?

Thanks for any information

[holehead]

Hi

Sorry to hear the symptoms are back, what is your current frequency of injections with gp and when we're your last blood tests taken including B12,folate and ferritin. I would encourage your gp to give you a blood test including the above and see what they say if you have any problems as a PA sufferer I would speak to the pernicious anemia society for advice before any further private testing.

Mark

[Doubleblank in reply to holehead]

Hi Mark, Thanks for replying.

I have the injections every 12 weeks, am I right in thinking that the pins/needles in arm/fingers and this latest symptom of slight numbness/tingling down leg into outer edge of foot is peculiar to PA only or could it be something else?

[holehead in reply to Doubleblank]

Hi

No problem

The symptoms you describe are common to B12 deficiency and others will tell you their experiences. However your 12 week injections are too far apart and you need to get a copy of the nice guidelines for your gp as you need regular injections until neurological symptoms stop. Do hope you get sorted

Mark

[Doubleblank in reply to holehead]

thanks

[clivealive Forum Support]

Why not simply explain to your doctor the return of some neurological symptoms and ask for more frequent injections?

I've had P.A. for 45 years and I've had the same problem with returning symptoms for the past few years and have managed to persuade my doctor.

Are you on twelve or eight week injections. If you have P.A. with neuropathy you should be on at least eight weeks.

As holehead suggests it also may pay you to have your Folate and Iron levels checked as too your Vitamin D as symptoms of deficiencies in these can be similar.

I wish you well

[Doubleblank in reply to clivealive]

Thanks Clivealive,

Having not long joined this fantastic site, I am only just discovering(after quite some time) that the symptoms I've had i.e. tiredness, pins/needles and no concentration or memory of common words could be the PA. Been told stress, which is very possible given had quite a year 2015. So wanted to give things a chance to settle, but this business in the leg is there every day, now(could it be sciatic nerve, I wonder?

Injections are every twelve weeks.

My diet is very good plenty of green veg and well balanced too.

I get out and exercise on average 3-4miles each outing(love walking)

I've always been a very positive person but just want some answers.

[fbirder]

I would ask for a referral to a neurologist. Your peripheral neuropathy could be due to a huge range of possible causes, not just a B12 deficiency.

In the meantime you could ask for something for the neuropathic pain - gabapentin (or pregabalin) or amitriptyline are commonly used.

[Doubleblank in reply to fbirder]

Thanks, fbirder,

I don't have pain as such, just aching in lower left side of back & pins/needles and a slightly numb feeling down left leg and into foot which eases when I go to bed.( I hate taking tablets of any sort if not needed so will ask for the tests and see what happens...

[sirlam]

I would agree with the comments above - you are just not getting frequent enough injections! Hope your GP will test the other stuff too and perhaps see a neurologist to be sure (but, in my experience, do not expect him/her to have much understanding of PA). I self inject (following new neuropathy on 8 weekly jabs) and it took about 8 weeks on every other day injections to lose the pins and needles!!! (So you can see why my 2 monthly jabs did not do enough!). Get the PA brilliant people to support you to up your treatment and get your GP on your side. Good luck!

[Doubleblank in reply to sirlam]

If I have to go down the self injection route in the future, (dreading the idea of it!) are there any self-help tutorial videos that are shown being carried out by professionals? The ones I've seen are by various people and frankly, some of the methods look decidedly risky!

[taka Administrator]

Hi Doubleblank

It is probably a good idea to go speak to your GP about this. It may be B12 related but it may also be something else - possibly to do with your back,.

About 8 months after my PA diagnosis I developed buttock and leg cramps and pain - on 1 side only. Bed was the only place I could get comfortable. The pain only lasted a couple of weeks but shortly after that about 2/3 of my leg went partly numb - especially the outside edge of my foot which was ~80% numb. After an MRI of my back I was diagnosed with what is commonly called a slipped disc - part of one of the discs (L5/S1) in my lower spine compressing part of the sciatic nerve. You could follow the S1 dermatome down my leg and tick off all the parts on my buttock / leg / foot affected - even down to the numb outer edge of that foot! I'm ok now but still have the odd day with that outer edge of my foot has varying degrees of pins and needles. Physio helped a lot.