Hi folks, well I've been on B12 SI since early May.
I don't have a firm diagnosis, this is a therapeutic trial.
Nothing has improved much except my depression, I keep thinking I must be barking up the wrong tree because there should be other improvements by now but when I try to reduce from two injections per week I do find my mood gets worse.
Can I just keep going with twice a week indefinitely? It's so strange to be having to make the decisions myself, I'm a terrible worrier (generalised anxiety disorder actually and on duloxetine for it) and I wonder if I'm doing the right thing.
Has anyone else found that their mood lifts but little else changes?
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AmyG6500
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As you haven't a firm diagnosis, you don't know 100% if you have B12 deficiency or PA . But you cannot do yourself any harm with the injections of B12. I hope that you are getting plenty of folate/ folic acid , as the 2 vitamins act together . After my diagnosis of PA , and I self -injected 1X weekly ), all my symptoms started to disappear . But my numb feet have turned into burning feet, and after 2 years , have not improved further. But you must be patient ! It is still early days , and everyone is different .
I've only recently been diagnosed B12d and started injections, and so far the lift in mood is the only benefit I've had (but what a benefit it is!). For the first time in many years I feel capable. I'm hoping my neuro symptoms will improve over time, but it's early days and have to be patient
How funny ! My B12 arrived yesterday, and I am going to do my first injection today.... thought about you and how you might be faring because of this. Glad you're here!
"nothing has improved except my depression.." - well that sounds like quite a big thing. Also didn't you say a while back that diarrhoea condition had improved ? Is that still true ? In which case, 2 big improvements.
It's still early days for you I think. I was on 2 injections a week for 6 months and in the end started to get disheartened because I expected it all to be faster than that..... huge mistake. Sent to haematologist and now on 1 every 2 months - and even that, I believe, is only because no-one wants to be the one that actually stops it completely and kills me !
I think I started to forget how ill I had been, but started to get worse again when reduced to 1 a month, just not as rapidly as when I was reduced to 1 every 3 months. What I'm trying to say is that not getting worse is an improvement of sorts. I intend to treat myself to an injection every other day until I can't get any more improvements (as per NICE guidelines) - and expect it to take a long time. Maybe up to 2 years, as suggested by Stichting B12 Tekort (in Pinned Posts on the left). Foggyme drew my attention to a post on this forum where someone injected every other day for a year before improvements started and then continued to improve.... so don't give up.
Record changes in symptoms (I've had some go and then come back when injections reduced eg bleeding gums, sore mouth, & others appear: "sleeping in the afternoons" turned into "uncontrollable yawning bouts" !) I still record symptoms even though GP says it's obsessive (also a symptom) because some expert somewhere might one day see one of my symptoms and say "Yes, that's a thing I know about, because I've seen it once before..." and if not, at least I might notice small or gradual improvements that make me feel better. Besides, my memory is still rubbish, so I would never remember dates, appointments, symptoms etc.
Even the GP noticed, after a few months, how well I looked when having 2 injections a week: hair, skin, nails... but these things meant little to me when what I wanted was cognitive function, ability to concentrate, elimination of mood-swings. Now I just see them as indicative of gradual improvements. If only impatience hadn't been such a big symptom, I might have shut my big mouth and been allowed to continue on 2 a week.
Still, this way, I get to allow myself what I think I need and get to decide when.
Please don't worry. If you've been ill for a long time (think back to what you now recognise as your first symptom), then the recovery is bound to take a while. My first symptom was sore, splitting and bleeding skin at the corner of my mouth. This was about 10 years ago and I took no notice. It's also the first symptom to go away when treatment is adequate.
If you are getting improvements, keep going. With love x
PS: Any SI tips would be welcome. Off to buy an orange !
Hi Cherylclaire , great to hear from you. My top tip on the SI is insert the needle quickly. The doc told me to say 1,2,3 and in, no hesitation as it hurts more. Then try to keep the leg muscle relaxed and inject the serum really slowly. You will be fine, send me a message if I can help further but it really is not a problem once you get used to it.
That's really good advice about the thinking back to early symptoms. It was actually 20 years ago for me. I have been on anti-depressants for the last 17.
Yes the diarrhea is still much improved. I too think I was expecting bigger improvements to happen sooner. I haven't kept a record because my mood swings vary sooooo much even hour by hour. I could try though.
I'm waiting to see a neurologist to rule out MS but apart from that the GP says it's CFS and GAD and has no further suggestions.
I have refused anti-depressants (Amitryptilene) now probably 4 or 5 times (sometimes also offered as painkillers) and also counselling. I'm not depressed just because I cry at nearly every appointment: I am symptomatic: exhausted/ mercurial ..and perhaps, after all this time, disappointed and slightly desperate- which I consider perfectly normal, given the length of time all this has taken.
I feel as if my body is trying as hard (if not harder) to get through to me: what does it want ? Perhaps more B12 ? I don't know yet, but certainly not less. It doesn't seem to like anything I give it to eat, though I'm eating well and healthily. When ill, I look neglectful: hair, skin, nails, gums, teeth... You can see why GPs first thought is that it's dietary or depression.
I am also being sent back to neurologist, probably because while the haematologist could not find anything beyond raised MMA levels, she could see I'm not great. Neurologist has already told me he doesn't know much about B12 (surprised me, anyway!)
All of the diagnoses you mentioned above are familiar to many PA sufferers as initial misdiagnoses of their condition too, which makes it even harder to discover the truth.
SIBO has also been suggested by haematologist, and I'm getting breath- tested for this: because of MMA levels, diarrhoea and osteoporosis. The bacteria live off your vitamins- including B12 and D - so a possibility, but does not disclude a genuine B12 deficiency since there is a real link. It can be chicken vs egg: lack of stomach acid creating perfect bacterial conditions for SIBO but killing off what you need vs SIBO bacteria stealing B12 from host. So loads of antibiotics alone may not be the whole answer.
Also being scanned for a hernia in l/h groin - again, possible, but not explanation for everything. At least they're still looking.
Injection itself went well in that I did not feel a thing, but still managed to make a pig's ear of it. Problem being getting info from library computer, then having to recall it once home- memory and cognitive abilities not great right now. Evidently didn't get it all out of the ampoule in the first place and couldn't get it all out of the syringe- how wasteful - and forgot to draw back and check for blood: "Must try harder" !
Dewbuc AmyG6500 I use a range of alternative supplements mainly sublinguals (adenosyl) and nasal spray/drops (methyl and hydroxo).An absorption problem does not mean that no absorption takes place - small amounts of B12 are absorbed outside the ileum - though this does vary from person to person but the average is about 1% - so that means that taking really high doses can result in enough being absorbed 'passively' - so 1000mcg taken orally would result on average on about 10mcg being absorbed.
Although sublinguals are supposed to work by absorption through membranes in the mouth the evidence the fact that the amount that gets into the blood is only just better than 1% on average means that most of the absorption is probably still passive in the guts.
Nasal averages about 3% absorption from the studies out there - which means it's a bit better and some is being absorbed through membranes in sinuses etc as well as passive absorption.
Please keep a journal so you can keep track of all the little changes, good and bad, as you go along. It will amaze you and help the Dr work out what is happening to your body. Good luck, you are on the right track.
Funny - my depression has been the last thing to go! I now si daily, on the principle it can't do any harm, and finally everything seems to be almost back to normal! Good luck - hope everything starts to improve soon, and if not, why not up the frequency of your dose?
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