Stuck in B12 Limbo

[becca85]

I'm 27 going on 87 at the moment, most people laugh about me being so tired all the times or when I yelp in pain due to the pins and needles but It's all to much for me now. I was told over a year ago one of my antibody tests come up with pernicious anaemia, My Gp decided to write it off as a fluke as my b12 was borderline.

My folate was low then but that's pretty normal for me now, I know that If I stop the folic acid I will go back the magic 2.2 level (Always the same).

Health wise I was active mum working 5days a week split between 2 schools, That slowly dwindled down as I struggles some days just to move let alone stay awake. The joint pain is getting worse, sometimes I struggle to walk without severe pain or even just having a chance to type can take 10x longer.

Oh and then I have the forgetfulness that I like to call 'Where's my Kettle', It kind of explains it all really I forget things quite a lot mid task. My poor kettle has slept in the shed a few nights, Sat in the porch with the post I had put back outside for some unknown reason and then I have put it in the fridge/cupboards/oven. I normally remember sometime later, It's kind of a light bulb moment it suddenly pops into my head.

I had to leave work early today as I went really odd, In the staffs words I went really absent I cannot remember it at all. I just remember being touched by them trying see if i was ok and feeling like I was going to fall asleep.

I've been numb for a while now, It started off that I would get it a few times during the day but I now constantly feel like I have been standing on ice for hours or the walking on air effect.

It's pretty depressing more so when the doctors don't seem to listen to me, Even more so when the Gp tells you off for going back with the same problem.

[nostoneunturned]

Becca, this cannot be allowed to go on, these symptoms are typical of B12 deficiency. It is a disgrace that you had been virtually diagnosed as having PA one year ago and then this was dismissed as a fluke. I feel it should have been treated by immediate B12 injections as well as folate prescribed by GP. Your folate is very low at 2.2 but please do not try to raise this folate by yourself as by raising it alone the effects of a B12 deficiency can be masked and allow nerve damage to take place, but undetected.

Who is responsible for supplying the folic acid to which you refer? The two deficiencies, folate and B12, must be treated simultaneously as folate is necessary to methylate the injected B12, hydroxocobalamin, to change it into methylcobalamin, the form of B12 usable by the body,

For your doctor's enlightenement here is what the British National Formulary (doctor's treatment bible) says on Page 592 of the September 2011 edition:

"Folic Acid .......should not be used in undiagnosed megaloblastic anaemia unless vitamin B12 is administered concurrently other wise neuropathy will be precipitated"

This link takes you to a comprehensive list of symptoms:

b12d.org/book/export/html/50

Please go back to the practice, not necessarily to the same GP, and take a list of your symptoms which you are entitled to insist be recorded on your file, and require proper treatment for your folate and B12 deficiency or PA. If GP will not then either find a competent GP or insist that you be referred very soon to a haematologist.

Your are displaying neurological symptoms and you should have loading doses of B12 injections and continuing injections described in the same edition of the BNF as follows:

"Hydroxocobalamin

Dose.

By intramuscular injection, pernicious anaemia and other macrocytic anaemias WITHOUT neurological involvement, intiially 1mg 3 times a week for 2 weeks then 1mg every 3 months.

Pernicious anaemia and other macrocytic anaemias WITH neurological involvemnt, initially 1 mg on alternate days UNTIL NO FURTHER IMPROVEMENT then 1 mg every 2 months."

The capitals are mine. In my opinion (not a doctor) the second paragraph applies to your condition. You can find this and more at the B12 defciency site:

b12d.org/book/export/html/

There is also the invaluable Pernicious Anaemia Society. By joining it you will gain access to the helpline on which a medically qualified person can answer any questions you have:

pernicious-anaemia-society.org.

I wish you all the best and please keep posting so we know how you are getting on.

[nostoneunturned in reply to nostoneunturned]

You can learn about B12/PA by reading "Pernicious Anaemia: The Forgotten disease" by Martyn Hooper (has PA and started the PA society) and "Could it be B12?" by sally Pacholok and Jeffrey Stuart. Amazon should have both.

[nostoneunturned in reply to nostoneunturned]

Couple of links to b12d site given do not work but these do:

For symptoms: b12d.org/b12-signs-symptoms...

For BNF info: b12d.org/pernicious-anaemia...

I had 28 symptoms including your painful ones, at level 167ng/L, and have made a complete recovery from all so keep this in mind as you read.

[becca85]

Thank you Nostoneunturned.

I will go through all the info once I have dropped my little ones off to school.

It was my Gp who has been prescribing me with the folic acid, I have been on it for quite a while now as everytime they test my blood it's low. It goes up for a little while which seems to take a while to get there then drops again.

The Gp that originally mentioned PA asked me a few questions then said she will just check b12 every six months. I rang her back after told her that my great great nan had it, It was actually the cause of her death due to lack of treatment back then. The Gp didn't seem to concerned at all.

I'm having EMG test's done today, The neurologist has also changed my next appointment from april to next month. I guess Im hoping he will help me out somehow as my new Gp surgery have been awkward. My last visit to the Dr was awful, The doctor reduced me to tears in front of my children telling me off for going back again.

[nostoneunturned in reply to becca85]

Apart from enduring poor medical treatment it is a disgrace that any doctor speaks to a patient in a manner which is humiliating. This goes completely against all the standards of good manners and consideration doctors are supposed to extend to patients. I understand we can go to any doctor in a practice so it is to be hoped that you can change doctors and end any contact with this bully.

I hope you can have the neurologist check B12 levels and let him/her know you are being prescribed folate alone, and I hope that your encounter one with a pleasant manner.

Post your results here, please - remember that you are entitled to copies of all blood tests and copies of all letters between neurologist and GP and this is your absolute right. Might be a good idea to check out leaflets detailing patient's rights available from surgery if you have the time.

[becca85]

Thank you,

I still have no idea what is going on with me, I had the EMG but no results back. I asked the Doctor during the test If everything had come back all clear, He said that he would write the report the same day and that he couldn't tell me it was all ok.

Pretty cryptic with his answers to my questions, A few days later I had a letter moving my next neuro appointment from April to this month. I've been avoiding the Gp surgery, I only contact them when I need meds and even then It's a fight to get an appointment..

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...

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