Its been nearly a year now since I started injecting every other day with b12. My many symptoms have abated and I am much improved. However I still have a problem with tremors. The tremors are much finer after my injection but by end of second day increase. This is why Ive continued with the alternate day jabs. Also if I leave the jabs longer other symptoms return. Should I increase the jabs to daily?
It seems such a high frequency and am so puzzled as to why I would need such frequent injections.
Because of the high frequency Ive been taking a low b complex with folate.
I also suffer with hypothyroidism and since the b12 jabs it has really helped my condition too with my temperature finally normalising in range!!
The underlying cause of both these conditions is likely to be due to having Vitiligo Universal which has strong links to PA, hypothyroidism & other autoimmune conditions.
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waveylines
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I also can only stop getting worse if I have an injection every other day, which I have now been doing since September 2017. I have also wondered at times whether every day injections would be more beneficial or lead to quicker improvement of symptoms. I have sometimes taken a couple of "additionals", for instance when I go on holiday. I'm not particularly concerned with the amount, I just can't bear the thought of having to do this every single day. I'm a bit rubbish at it to tell the truth.
It has not been a straightforward "recovery", more a lessening of number and severity of symptoms over a long period, with blips that I cannot account for, not in diet (although this can't matter too much at this frequency) or amount of energy utilised or hours of sleep. Perhaps that is just the way it is, and probably bears some similarity to how the deficiency manifested itself originally: a very insidious and slow deterioration, barely noticeable at first.
There appears to be no rhyme or reason to me: I've had a very good few days, hardly any symptoms apart from very sore swollen then split lips, not just at the corners. This morning, I overdid it and had the overlapping yawns so badly that it was exhausting - gulping in air uncontrollably while hoping my lips weren't splitting any further ! I seem more able to recuperate now, without needing a 3 or 4 hour nap, which is a massive relief.
Autoimmune conditions seem to love company; having 2 or more seems to be quite common. Thyroid, esp.Hashimoto's, psoriasis, vitiligo etc. You've been unlucky. My family's medical history is absolutely cluttered with these conditions - and children on autism spectrum. No diagnosed PA though.
The only diagnosis I have had is for B12 deficiency then functional B12 deficiency, when I deteriorated rapidly once loading injections stopped and had to wait 3 months for the next injection- at this point, my serum B12 was >2000ng/L but very symptomatic and MMA raised. Liver function tests being fine, GP diagnosed, confirmed by the lab where MMA was tested. This has been disputed by most of the many specialists that I have seen, but none have found a viable alternative. I'm seeing an Inherited Metabolic Diseases consultant for my DNA story next month, which might shine some light onto this - if not, this is truly where I draw the line.
I know deniseinmilden does self-inject every day. She is the person that I most identify with here. She helped me to cope with this and find some sort of balance with daily vitamins and minerals, because my folate and ferritin were both very low end of range, and vitamin D on prescription for osteoporosis of the spine. I've now lowered my folate intake on advice of GP who monitors my test results. Now only the 400mcg in the multivit tablet. Ferritin is taking longer. I was advised to try to keep folate and ferritin in top 1/3 of ranges which seemed to work: advice from here not GP.
I have been lucky in that I did not experience tremors, muscle spasms or balance problems although I have lost a lot of strength especially in arms and legs. Nerves take a long time to heal, still have tingling and numbness in patches, mostly outer shins. Can't sleep with legs touching/ arms crossing- feels like too much weight: like really heavy bones ! This can cause tingling too, so can too much heat- even from a bath.
I never really had to think twice about my health prior to this. It's really hard work, listening to your body and trying to pre-empt any potential problems, isn't it ? I should imagine that it's doubled/trebled when auto-immune conditions cluster.
If there is anything that I find out that might be of help, I will post it on this forum.
I haven't yet had a symptom-free day but remain hopeful. General improvement still continues.
Thankyou Cherylclaire for your honest and detailed reply. I really appreciate it. Its very isolating being on your own with this & not knowing if your doing all you can. So good to know of some one else on the same frequency of jabs
Im sorry to hear youve not had any symptom free days. I found the betterthan b12 seemed to lift me. Maybe its the methylcolabin that does it.... I do three sprays in the morning and then three sprays at night as we
as my jabs!
I thought at one point I might be symptom free of tremors as I had brief periods where they seemed to have gone. Not now sadly though they are mild and I am lucky they are not worse. So like you am not symptom free but I have improved over the last year of jabs.
Ive recently talen on a personal trainer to try to help me achieve some exercise tolerance and build some muscle. I have to be very careful as I tire really easily but being able to avoid the crashing the next day with his careful programme has been a miracle! I have a very very long road ahead of me to get well and fit but am hopeful that with tiny tiny steps I will slowly improve.
Yes vitiligo, hypothyroidism & now B12 deficiency am certainly accumulating!! Haha! But I really do believe my vitilgo is the underlying cause.....its not as benign as GPs make out!!
I think Im going to trial the daily jabs just to see. Hate all the injections.....but I guess its far worse for diabetics!! I rotate round my thighs and stomach to spread the load!!!
Keep going and don't get disheartened by the bumps in the road. Don't be lonely: there's always someone here, whatever the time (some don't sleep much !) and it helps sometimes just to write it all out. Even if they're all asleep (never happens).
Tried the spray and it did nothing noticeable for me. Still trying Kombuchas, but I think I just like the taste.
Yes I agree, vitiligo is really something else: my mum got vitiligo, starting from a jab in the arm she had at school (she couldn't remember what she was being immunised against) and spreading slowly over her shoulder and down her arm. That's real autoimmune reaction that was completely missed.
I also remember reading a list of B12 deficiency symptoms which rather strangely (and without explanation) included "white vitiligo-type patches on forearms" and remember thinking "Strange... I've had that for ages !" Never seen it mentioned since and can't remember the source now...no doubt someone else here will.
It is still possible to get improvements, even after a year or two. You might still ditch the tremor. I believe that I am still able to improve. If I could chose, I would get rid of my cognitive problems and poor concentration first.
Met a lovely consultant briefly once who told me that I was doing exactly what I needed to do, to be persistent and just continue- that it would take a long time. He was an ENT specialist and knew what B12 deficiency looked like without needing to do tests. Just looked down my throat. So glad I met him.
It takes a lot of courage to do what you are doing, so I hope you continue from strength to strength, waveylines .
Thankyou Cherylclaire your lovely message means a lot to me.
I will keep going the alternative is a horrod decline if I dont. Am going to try daily for a few days from tomorrow eve to see if it helps or not.
That ENT specialist you saw sounds amazing!! I must admit it took a private GP urging me to finally take the b12 jabs route -to have the confidence to do so.
The other issue I have is overwhelming fatigue the next day if I do a bit more the day before even though on that day am doing things I feel fine! Frustrating!!
I also still get very disappointed when a few good days does not turn out to be permanent improvement, but is followed by exhaustion. The only positive there is that I don't now need a long nap or 15 hours' sleep (or both) - just have quite a wasted day where I get frustrated, grumpy and can't do (or say) much right, even simple things.
The ENT specialist was exactly the person I needed at the time to keep me on track when I was losing heart - like a guardian angel c/o the NHS.
U seem to hav a lot of knowledge regarding b12...can u pls tell as my levels hav reached 2000 after 1 yr jabs..is it ok to have a healthy child in this level..as google says higher the mothers level in pregnancy higher the risk of autistic child
This is something you would need to discuss with your Doctor. I'm not a medical professional.
There appears to be a link between autism and B12 deficiency- Sally Pacholok discusses it in her book.
I haven't ever heard of high B12 levels in a mother increasing the risk of having an autistic child.
I am seeing an Adult Inherited Metabolic Diseases consultant who is looking at my DNA results. They are looking to find out if there is a reason why I still have B12 deficiency symptoms and raised MMA despite self-injecting every other day.
All of my sisters have children on the autistic spectrum. There may be some hereditary link. None of my sisters are B12 deficient to their knowledge, but have auto-immune problems to deal with: Graves disease or other thyroid issues, psoriasis etc.
I'm currently looking for answers, but am sorry I can't answer your particular question. I can't even check what Sally Pacholok said- I gave the book to one of my sisters !
What I do know is that, since my B12 injections were started, my B12 levels were constantly >2000 ng/L - my GP does not bother to test my B12 now, but just checks my thyroid, folate and ferritin, vitamin D and FBC.
I inject daily. My doctor has prescribed every second day because he does not believe that daily makes any difference "because the literature say that it takes 48 hours for the b12 to be fully absorbed so it is a waste to do every day". I'm ok with that because it really doesn't cost that much for the b12 and he doesn't tell me not to.
One of the reasons I went onto daily was that I would forget to have them and then, once I did remember, it would take a week at least to get back to where I was before.
like a lot of people here, I track my symptoms and there was a noticeable improvement when I went to daily injections. There have also been two occasions when I forgot to take a shot. On both occasions my daughter has noticed enough to ask me if I missed a shot. So, I think it is beneficial for me, and worth a try for you.
Thanyou TroyNZ. Thats really interesting to read. I can associate with what you are saying....it is noticeable that by the end of the second day my tremors increase. Am not sure where your doc got the 48hrs from. Ive noticed it takes several hours to get into the system For me.
TroyNZ -ive been doing daily jabs for a week now & feel much better.....tremors have reduced too. Im still doing it subcut. If I want to change to IM what size/length of needle do you use? Doesnt ut hurt?
I use 25G 1" needles, mainly because that is what my prescription was for at the beginning. (I now by them online because I still get "looks" from the chemist when I go there, so it's easier to buy a few months worth online)
I have never done subcut but I imagine that I M doesen't hurt any more or less. It is never painful actually injecting the B12, just inserting the needle sometimes when I chicken out at the last minute and just break the skin. But I do push the plunger quite slowly.
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