Newbie..here's my story.

[blondie2505]

Hey all looking for advise on possible self injecting.

Once upon a time a young 28yr old lady started to experience a tingling sensation in her feet/legs...thought oh its just one of those things until it spread all over my body up to my face and never went away scared and frightened I went to the docs...

She looked quite abit confused as this was the only symptom I appeared to have..and didn't seen to concerned although abit bemused... she said you will have to make a note of if and when this happens as it may just go away or never find out what is the cause..even tho she did say a possible vitamin deficiency could be the cause.

Of course I got a call about a week later saying I had PA and that I needed regular injections she did seem very thorough like this isn't something you should ignore and I needed to be topped up Asap. That is all I new at the time,.. went through the protocol everything seem to come bk into place and I felt more alive than I had in a very long time .. other symptoms seem to disappear that I didn't even realise was linked to anything as they had become normal to me like feeling more tired than usual the odd chest pain and heart palpitations I thought it was just stress..

I would have to say for the first six to nine months from what I recall I was pretty much ok... but things started to slide and the symptoms would re occur before I was due for my 12wk jab. I went to docs expressed my concerns and symptoms they just kept saying I was probably just really stressed out and I should go on anti depressants...I thought ok aim feeling crappy I keep doing weird things that dont make sense and getting times and appointments muddled up. Maybe I was just really stressed and that would explain why I felt like I had lost the plot a little esp as test results came bk normal I have no idea what the results were tho as I never requested in paper.

Further down the line after receiving anti depressants and still not taking them as I wasn't 100percent convinced it was the cause of all my problems. I started to ache all the time get more and more tired and just feeling weak like I had been knocked down by something... went back to docs more tests nothing came back more pills prescribed I still refused to take them in the end as I new something else was going on.

I also started to have un explained itching pains and digestive issues... so had ultra sounds and colonoscopy still came back clear except I had a slight problem with my whom but she ensured me that was nothing to do with the pain I was getting.

So after lots of visits to docs I managed to get my jabs down to 8wks. Even tho they last me five /six max..I was told that I wouldn't get it any sooner and that there was no evidence to support the fact that theres any more benefits to having it sooner than the eight weeks and that it was a physiological effect that people felt worse because they knew they were due a jab.

Now two years later iam experiencing numbness and weakness in my left arm and leg also lots of pins and needles. Great mental fog..... went back again and waiting to see a neurologist about having a brain scan. I'm really worried as I'm sure its because I'm lacking in b12 as it gets slightly better when I'm topped up. IV fully pointed out that everything esp the numbness weakness in limbs gets better after top up and they ignore the fact so many times.... I'm worried one day the feeling won't get better or come bk..

Should I self inject and how do I go about it?? Please help..

[clivealive Forum Support]

Hi blondie2505 Have you thought to join the Pernicious Anaemia Society? It costs £20.00 for a year's membership and they will probably intercede on your behalf because you are not getting the treatment you need.

[Vicki-s]

That's exactly why I started self injecting it was the best decision for me. My story is exactly the same as yours!! I joined the Facebook group (b12/pernicious anemia) and they have great help and advice and links to order supples so take a look. Take control of your own health like thousands of us do and you won't look back!

[Sleepybunny]

Hi,

"young 28yr old lady started to experience a tingling sensation in her feet/legs"

I've assumed you're in the UK.

When you were first treated, how many loading injections did you get?

Standard UK b12 treatment for those with b12 deficiency without neuro symptoms is 6 loading injections over 2 weeks then injections every 3 months.

For those with B12 deficiency with neuro symptoms, loading injections should be one every 2 days for as long as symptoms continue to get better (could mean loading injections over a period of weeks even months) then injections every 2 months.

"symptoms would re occur before I was due for my 12wk jab"

"after lots of visits to docs I managed to get my jabs down to 8wks"

Your comments above make me think you were originally on the standard treatment for B12 deficiency without neuro symptoms yet one of your first symptoms was tingling in feet/legs which is usually considered to be a neurological symptom.

What other neuro symptoms did you have when first diagnosed /recur before next injection ?

pernicious-anaemia-society.... Click on Symptoms Checklist

b12deficiency.info/signs-an...

UK B12 treatment

Details of UK b12 treatment can be found in

1) BCSH cobalamin and Folate Guidelines page 8, I gave a copy of this document to my GPs.

2) BNF (British National Formulary) Chapter 9 Section 1.2 Most Gps will have a copy of BNF on their bookshelf.

There are some on this forum whose GPs have repeated loading doses.

More b12 info

I also gave my GPs a copy of Martyn Hooper's book " What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency " which mentions UK b12 treatment for those with and without neuro symptoms.

Lots of info in pinned posts on this forum. I'd recommend looking at the summary fbirder compiled. lots of useful quotes from mainly UK B12 documents that I have found useful when dealing with medics. Link to summary in third pinned post and on Fbirder's profile page.

Another book I found helpful is "Could it Be b12" by Sally Pacholok and JJ. Stuart

Unhappy with treatment?

Link about writing to GPs b12deficiency.info/b12-writ...

The link does not seem to mention the BCSH Cobalamin and Folate Guidelines which I do mention if I ever write letters to GPs aboput b12 deficiency.

I am not a medic just a person who has struggled to get a diagnosis.

[blondie2505 in reply to Sleepybunny]

Your right I only received the typical protocol that was in August 2014.

I have all the common physical/mental symptoms... because of this it makes me depressed as I wasn't being listened to.

In fact the tingling I have always had that never went away even with treatment its just proceeded to get worse...

Before being diagnosed I had another symptom which actually I didn't relies was related as was probably the first most noticeable symptom looking back it happened for ages but I ignored it because I stupidly thought it was because I was tired.

I would get up in the middle of the night every night to go to there loo... and I would stagger a..like my legs had given way on me and I would almost fall to the floor and sometimes I did,i thought its just because your half asleep and didn't think to much of it.

[fbirder]

Ask to get tested for the full screen of coeliac antibodies. If you have PA then it's more likely that you may suffer from other autoimmune diseases. My neurologist suspects that my problems (lethargy, tingling and numbness in hands and feet, balance problems) may be down to gluten ataxia.

We decided it wasn't B12 because the timing was wrong (neuropathy got much worse 6 months after B12 treatment) and he says it ain't gonna happen with my high B12 and low MMA and hCys. So it's quite possible that your neuropathy is due to something other than B12.

I'm waiting for the results of my blood tests (path lab screwed them up first time) to see if he's correct.

[blondie2505 in reply to fbirder]

thankyou for the respsonse.. I was tested for celeiac antibodies when I was about 21 orthough I think it was the standard test which only tests for two antibodies for the gut I believe ..I have also myself thought about gluten ataxia I will mention this to the neurologist when I see him hope he doesn't think I'm mad. I also am on a gluten free diet ortho I feel less achy and bloated not much else has improved however I may still be inguesting unknowingly due to people still eating bread in the house from breadcrumbs ..and eating out cross contamination .. as I just choose gluten free but don't mention to the server as I'm not yet diagnosed if that is the cause of my problems. infact as long as I remember which really I should have posted I would always feel worse after eating for the next few hours un til the effects would start to wear off ...then again it would be time to eat again and it would happen all over again. I mentioned it to my doc and she completely dismissed it as I had been tested years ago tho to my knowledge this sometimes comes back with false negatives and doesn't give a full spectrum of antibodies..i have looked into getting it done myself but it will cost me 340 pound which I cant really afford. its the cyrex tests. and id need to start eating gluten again which could enevitablly make me worse off. please let me know the results of your tests I would love to know. many thanks blondie2505

[patez]

It is not MY assertion that B12 can't be absorbed sublingually, but I stand corrected by you, and this article

google.co.uk/patents/CA2358...

which does state "The delivery systems comprise a B12 containing matrix material compatible with the mucosal membrane into which the vitamin B12 is to be absorbed, e.g., a lozenge." It goes on to say "A presently preferred oral matrix material is the lozenge developed by TheraTech of Salt Lake City, Utah, (a subsidiary of Watson Labs) which is described in U.S. patent 5,346,701. The lozenge is formulated to provide maximum absorption of macromolecules."

My apologies for being misled/misinformed.

[Sleepybunny]

Hi,

I've read it's possible to have Coeliac disease with negative blood results for coeliac antibodies.

People who are IgA deficient don't produce the usual coeliac antibodies.

coeliac.org.uk/coeliac-dise...

[fbirder in reply to Sleepybunny]

People who are IgA deficient don't produce the usual coeliac antibodies.

Which is why the full screen for coeliac antibodies should be carried out.

[jade_s in reply to fbirder]

Hey fbirder, could you elaborate please? I want to get my stepson tested for celiac as he has some issues but wasn't sure which Abs to ask for, as I saw there are several. The doctors aren't being supportive so we will get our own labs - several of the GPs in the practice have said he's in 'perfect health' despite many issues including intermittent diarrhea, *below range* vit D and iron saturation, low-normal b12, etc etc etc, makes me want to scream auuurgh!!

[fbirder in reply to jade_s]

Sleepybunny 's link above has details under the section IgA Deficiency

[jade_s in reply to fbirder]

ok thx!