Is anyone else suffering with numbness, Pins&Needles and electric shock type pain?

[becca85]

I've had problems for a while now, The Gp has been pretty useless and I'm yet to get any result from EMG test. I feel as though I'm getting nowhere when I mention the above symptoms I seem to get fobbed of with one excuse or another.

I was previously told I tested positive for an antibody to do with PA, the doctor then decided to write it off as a fluke due to my B12 levels being ok. That was well over a year ago and since then I've been on folic acid most of the time as my level is normally around 2.2/2.3. I'm praying the neurologist will give me some answers at my next appointment but I'm not keeping my hopes up after everything else.

I've started blogging how I'm feeling if anyone wants to read, Sorry It does contain some swearing as to be honest I'm at breaking point now. I cannot feel my legs from knee down most days now and I haven't felt my feet for a while.

thinkimspeakingtomyself.wor...

wp.me/p2Kv8P-47

wp.me/p2Kv8P-c4

wp.me/p2Kv8P-dV

wp.me/p2Kv8P-ee

[Hidden]

Hi Beeca,

I did have those symptoms including slurred speech and extreem foggyness, tiredness and thirsty, very dry skin, chapped lips and ichy..It was decided I was iron def and had iron with folate tabs...no B12 tested..think now it was the lack of B12 with still giving iron with folate. However It did go over some 6 weeks and just put douwn to some mystery virus..If I were you I'd go and have just my serum B12 tested again, privately if you must, it is cheap and there are labs that will trest privately without the need of a GP referral..Have a look in your area for a private clinick and just ring thejm up to ask if they will do a serum B12 test for you and how much etc. Or try to change to a GP who will test..Idealy one that will give you a referal letter for the Active B12 (Holotranscobalamin) test at SThomas..

details:

gsts.com/new-tests.html

GSTS Pathoogy

Blood Test Centre

Ground floor, Lambeth Wing

St Thomas' Hospital

Westminster Bridge Road

London

SE1 7EH

Tel: + 44 (0) 207 1887188 x 52471

E: [e-mail]

And now apparently at:

tdlpathology.com/test-infor...

Info about active B12:

active-b12.com/

Other private labs one can use for bloodtests (with out a need for refferal from GP) etc are:

thehealthstation.co.uk/path...

gdx.uk.net/

I hope this helps

[19davo66]

Becca - hello, David here from Salford, Gtr Manchester.

I have been having for a while now, pins & needles type feelings in my feet, & hands, feelings like the devil has decided to pierce my skin slowly with red hot knitting needles, (hands & feet) - with no warning. Feeling that everything that touched the back of my hand was wet, & have been very confused by this. People thinking I have been drinking in my bedroom when I was visiting at Christmas, getting up in the night for the loo & banging into walls, and to add to the joy - slurred speech, cling film round my brain & feeling very tired & unwell.

Year ago I was taken to hospital with respiratory failure, been waiting for things to improve, luckily a respiratory specialist I was seeing checked my Thyroid, B12 & Folate levels and the B12 was 74 dangerously low, & my Folate also was low.

Went to neurologist last week, he has ordered blood tests, he is on the ball - I am back with him next week for more blood tests.

From the PA society I have had great info from members who have told me to talk to my GP etc, which I did & he is a little confused as to where I got the diagnosis of Pernicious Anemia, the man obviously doesn't read the CC at the bottom of the hospital letter, as I was included in cirucaltion & Cardio Thoracic chap - read blood tests & and wrote to my GP.

I now have all hospital folk on the ball, my GP has gone backward and has asked me to gi AGAIN for B12 & Folate tests, even though I have just had my bolster lot of B12 injections 5 over 10 days.

Feet are still the same, as are hands, I am confident the neurologist knows what he is doing & the GP will catch up.

If you Twitter, #PerniciousAnemia or any #B12 & you will be surprised, the help you will get.

It is awful at the moment, I have been like this for a long time, I am glad, someone is now listening to me.

Good luck, best thing you have done is write this question - I am very grateful to the help I have had from here.

David.

[PerniciousAnaemiaSociety]

You say your GP said your B12 levels came back as 'normal' - any idea what they were? You should be receiving treatment if you have the symptoms of B12 deficiency, especially if you have the IF antibiody. If you need mecial help to present to your doctor, our forum has a lot of information, as does our website. Please consider joining as it helps fund our vital work, it will also give you a lot of benefits such as access to the forum and newletters.

If you have pins and needles, this is a serious sign of Neurological damage. You need treating with B12 immediately; ask for a more recent serum B12 test AND a folate level test. The test doesn't test for active B12, however, so may be much lower than the level stated. Our Chairman, Martyn Hooper, has written a book you may find helpful to find out more about problems with diagnosis and treatment; this may also help you in discussions with your doctor.

As you have neurological damage, when you start being treated instead of the usual six loading doses, you should receive one every other day until no further improvement (of neurological symptoms.) This is specified in the BNF. So know what you are entitled to!

Also do remember that if you live in the UK you have a right to see another GP or to switch at any time if you feel this is needed.

I hope this helps and that you feel much better soon.

[poing]

I had electric shooting pains from my wrists into my hands. This happened shortly before I discovered that my B12 levels were poor, and so I started on sublingual methylcobalamin very soon after, and have not had the electric shooting pains since. I think that I was just starting to be symptomatic and had a narrow escape.

Apparently some people can't convert the synthetic folic acid into its active folate form. B12 also has active and inactive forms, so the blood test for total b12 is not the whole picture, as someone else already said. Don't let your GP fob you off on this one... It's too important.

[Karelli]

Hi Becca,

I started getting symptoms shortly after the birth of my second Daughter 20 years ago. I started losing weight, getting depressed, becoming exhausted and then I started to get the pins and needles, restless legs, numbness and loss of feeling in my legs to the extent I got up one night and collapsed on the floor. After 18 months I was diagnosed with B12 deficiency but it was not caused by PA. I was given booster injections of 3 a week for 3 weeks, 1 a month for 3 months and then once every 3 months. After about 5 years one of my Drs told me I didn't need them any more; not knowing any better I believed him. Over the next 5 years I started to deteriorate and symptoms started to come back; depression, dizziness, tiredness, pins and needles etc.. My marriage broke up and I was a single parent working full time and in the end I went back to the Dr and pushed for a blood test, convinced it was my B12 - I was told my count was normal. Over the next 2 - 3 years my symptoms got worse and I went back another 2 times. On this last time I was told my B12 count was 100! and was asked why I had come off the injections in the first place!! I have since found out that the counts on the previous 2 tests were 160 and 120 respectively. (The absolute minimum should be 180). I have been told I am now on them for life and that 1 every 3 months is sufficient (I actually go once every 10 weeks as I can feel myself deteriorate if I leave it any longer)

I have recently found out that our family carries MTHFR (a faulty gene) and there is a very strong link between this and B12 deficiencies.

I guess what I am trying to say is never give up; you know your body and when something doesn't feel right keep pushing for answers!

[Erainy]

I was reading the label of my B-complex by BioCare and it says: "Long term intake of amounts greater than 10mg of vitamin B6 may lead to mild tingling and numbness." Interesting that too much or too little causes this sensation.