Brick Wall Syndrome

[syl123]

Just had B12 injection number 5, not feeling much better, a slight improvement on my energy level but thats it. The history is my B12 serum test came back normal, I was told there was no further test available on NHS I had to quote BMJ guidelines in relation to neurological symptoms to get 3 x B12 then had to fight for another 3 when I was reviewed , my GP said I should of felt great within hours of the 1st one but thats simply not correct. Have had attitude from the nurses doing the injections one commented today that B12 injections are "trendy" at the moment, I said no actually the b12 serum test is inconclusive so if people are presenting with a deficiency then their active B12 levels must be on the floor. I also had to read through a report my GP had done for my Occupational Health Practitioner (work)

all my GP has mentioned is ongoing dizziness and confirmed referral to an ENT specialist (4 months wait), she even said my blood pressure is normal even though I was seen by another GP (same practice) who said it was high and gave me 3 months to try and control it through diet, I did a weekly daily BP check at the surgeries request and my blood pressure range averaged at 147/95, im confused why my GP has also not mentioned my ongoing neurological symptoms or B12 injections. I have left a message for her to look at the report again before it is sent to my employer. Im wondering what to do next?

[clivealive Forum Support]

Hi syl123 was your Folate level checked as this works with B12 and iron to make red blood cells.

It is true that some symptoms will "disappear" quickly but it is also not uncommon for other neurological symptoms to appear to get worse before they get better as the B12 starts to repair the damage done to your nervous system. That is why the NICE and BNF guidelines state that if the patient has neurological symptoms injections should be "every other day until there is no further improvement"

See the NICE guidelines below. Click on the link then on the "Scenario Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

Arm yourself with the facts and attack that brick wall, ask for more injections and if you succeed you will be helping the next patient along who presents the same problem. Don't forget about your Folate.

[syl123 in reply to clivealive]

Thanks Clivealive, folate was deficient so im on tablets for that, last injection is this friday then GP wont see me until a week after that so the 6 injections are all im going to get I used to trust my Dr and have faith that they would do no harm but reading the posts on here , I think there is something seriously wrong with the way the NHS is running, I wonder what the true "life" costs are for the patients who are ignored or sidelined? How much cancer goes undiagnosed until its too late, its almost as if they dont want people to be sick so they turn a blind eye. My GP is talking about a possible diagnosis of Chronic Fatigue/Fibromyalgia, how can she possibly label me when she has failed to rule out everything else? Seems to me that the GP's are onto an easy ticket, 6 patients an hour, nobody really checking up on them and then they are not held to account when things go wrong.Perhaps it just new government policy to get the population down? sorry stepping down from my soap box now lol.

[clivealive Forum Support in reply to syl123]

Impossibly it would need for a doctor to experience the symptoms of every illness presented to him/her by the patient in order to fully understand and treat them.

Seven years ago, when I tried to explain the return of neurological symptoms in the run up to my next scheduled injection, my "one size fits all" doctor simply laughed at me and said it couldn't be anything to do with my P.A as I'm getting the B12 injections.

I then joined the Pernicious Anaemia Society and on their (then) forum posted the question "Am I the only person in the world to feel the need of more frequent B12 injections......?" and was amazed at the response. No! I was not alone and I began to learn and eventually broke down that "wall" and got more frequent injections.

I had previously lived for nearly 40 years in complete and total ignorance of what P.A. was all about as I never knew anyone else who had it and none of the succession of practice nurses who gave the injections or doctors I saw for whatever reason ever monitored or asked how I was getting on. Sadly my same "ignorance" is shared by many in the medical profession.

I'm now 76 and still "clivealive" after more than 45 years of P.A.

I wish you well.

[syl123 in reply to clivealive]

I had a similar conversation with my GP who was refusing to give me more than 3 doses,I told her that people have to be pretty desperate to volunteer to come and have a needle stuck in their arms 3 times a week lol .

Clivealive you are an amazing human being ,thanks for all of your help and support

[KimberinUS]

Protocol for b12 injections means supplimenting or at the very least monitoring folate, iron and potassium. If your iron has not been checked since the b12 injections, i would have that and potassium levels checked.

Low Potassium can increase blood pressure. You might want to research.

Once red blood cells have b12 and folate they can mature properly, which means a single cell will divide into 2 cells. Each of these 2 new cells only have 1/2 as much potassium as the prior cell.

Are you having any toe or calf cramping? Tired? Achy, like the flu but without a fever?

[syl123 in reply to KimberinUS]

Hi KimberinUS ,i feel dreadful cramps in my toes and yes very achy although i think im running a fever now as well. GP refusing to give me further B12 the reasons given are that nobody needs more than 6 injections and I have not shown any improvement... this is because I only started feeling better after no 5 so she has decided I dont need it!!! new symptoms of intense head pain that woke me up during the night accompanied by nausea which has continued with "fuzzy" headache and blurry vision. I did her a letter requesting more B12 but its been refused so will now be looking into self injecting. She has offered to check for intrinsic antibodies but im not sure that will show anything as I have had the B12 injections for 2 weeks.

[KimberinUS]

Im not suggesting anything crazy as far as potassium goes. Just add up how much you are getting. I thought i was getting plenty because i was eating and blending fruits and vegetables for their folate and started cramping and felt achy. I did the math. I was only getting between 700 to 1000 mgs of potassium from diet plus additiinal appox 1700 from pumkpin seed oil capsules for a total if about 2700 mgs daily. I looked and my multivitamin only has 49 mgs. The recommended daily allowance is 4700 mg. I increased my intake by drinking fruit punch flavored Vitamin Water, which has 880 mg of potassium per bottle. This got me up to approximately 4400 mg per day and in two or three days the cramping, achiness and lethargy resolved.

I hope this helps and that you feel better soon.

[syl123 in reply to KimberinUS]

Hi kimberinUS ,sounds like you are very switched on about vitamins,thank you the information you have given will certainly help me if potassium is an issue.Im pleased you are feeling better.