Hello everyone. Looking for a bit of advice. I have had a really REALLY annoying eye twitch off and on now for a number of years. Yes years. I have a diagnosis of PA that I receive 3 monthly injections for, and I have kept a diary of symptoms along the way. It appears the twitch correlates with the injections. It seems to stabilise when I have a my injection, the stamp time creep back into daily life after about 4weeks. I read that maybe magnesium could be low, and wondered if there was any evidence that there is some relationship between b12 and magnesium depletion?
I have a doctors app again, they are not willing to give me more frequent b12 injections and I’m to be honest scared stuff this eye issue is something more sinister. But remaining calm and trying to deduce the issue. Anyone have any recommended reading or have symptoms like this with PA? Thank you in advance
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kristianjones
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If b12 helps for 4 weeks, it looks more lika a b12 issue.
B12 is so safe and cheap, so it's a pity they won't offer you this relief. Perhaps you could ask to at least try it more frequently for a while to see if it helps? I wonder if it qualifies as a neurological symptom that would qualify you for more frequent injections.
I had constant eyelid flickering until I got B12 treatment then it disappeared. To me when the eyelid flickering starts again it's a sign I need more B12.
I take a low dose magnesium supplement which seems to prevent the painful foot cramps I used to get.
I wrote a very detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other b12 info.
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms present.
I often suggest putting queries about treatment/diagnosis in a letter to GP as
1) Letters allow writer to express themselves clearly
2) If letters reach GP before next appointment, GPs can do their own research
3) In UK, my understanding is that letters to GPs are supposed to be filed with medical notes so are therefore (hopefully) less likely to be ignored than info passed on verbally or on photocopies.
4) Letters create a paper trail which can be useful in case there is a need for future complaint.
Always keep copies of any letters sent and have copies of recent letters with you in case GP has mislaid their copy.
Letters could contain symptoms list, test results, date of diagnosis, family and personal medical history, extracts from UK B12 documents, requests for referrals etc
If you are not getting the recommended level of treatment then it might be worth talking to your local MP.
I have B12 injections roughly every two months ... this took a lot of persistence on my part.
This is not enough for me as my symptoms return soon after an injection so I have to self treat as well. Many on the forum self inject although my personal opinion is that this is a last resort.
Have you asked your GP to refer you to
a) a neurologist as you appear to have neuro symptoms (eye twitching)?
b) a haematologist?
NICE CKS link below indicates that GP should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. Has your GP done this?
If they won't refer you to a haematologist (money is tight in NHS and GPs may be reluctant) perhaps you could ask GP to write to a local haematologist asking for advice.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
There is no set time limit for how long every other day loading jabs can continue for those with neuro symptoms.
BSH link suggests possibility of a review of loading injections after 3 weeks of every other day loading jabs for those with neuro symptoms but my understanding is that if symptoms are still improving at 3 week mark then the every other day loading injections should continue.
You appear to have been put on the first pattern when my understanding (I'm not medically trained) is that you should be on second pattern as you appear to have neurological symptoms.
You could point out to GP that both treatment patterns allow for maintenance jabs every 2 months.
How many loading injections did you have at the start of treatment?
If you weren't given recommended amount of loading injections, you may be able to negotiate with GP to restart loading injections or to have another set.
See BNF, BSH and NICE CKS links in my other post.
GP can find info on UK B12 treatment in Chapter 9 Section 1.2 of their BNF (Britsh National Formulary) book.
It's possible that your GP may have an out of date BNF book. See BNF link for up to date info.
You could ask your GP what treatment BNF book indicates for those with B12 deficiency with neuro symptoms present. Have a copy of BNF online info with you.
It is possible that GP may find this confrontational.
Warnings
1) Some parts of UK have local guidelines on treating B12 deficiency that are out of date. It's possible that you might be in one of these areas which in turn could explain the GP's attitude.
I suggest you track down the local guidelines on treating b12 deficiency in your area and compare them with national guidelines/articles such as BNF, BSH , NICE CKS etc.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Eye twitching would usually be considered a neurological symptom. Medical term is "blepharospasm"
Do you have other neuro symptoms and does your GP have a list of all your symptoms especially every neuro symptom?
Other neurological symptoms that can be associated with B12 deficiency include
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, forgetfulness, balance issues, brainfog, proprioception problems (problems with awareness of body in space), strange behaviour eg car keys in the fridge etc?
Check lists below for other possible neuro symptoms
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy (PN) especially signs of sensory neuropathy so worth mentioning signs of PN.
I had eye twitches for years and hadn't noticed that they disappeared until I read your post. I have been treated for PA for 2.5 years. I self inject weekly as of 12 weeks ago. I thought I was well after a year of treatment on injections every 3 weeks. Then I asked to try every 2 weeks and thought I was well. Then I discovered this forum and realized that I was still quite symptomatic and asked for weekly injections. I feel sooooo much better now and I think I'm finally properly treated, but what do I know...
The eye twitching is a classic B12 deficiency symptom and extremely unlikely to be sinister - especially as yours goes when you get your B12 jab.
By withholding your jabs they are actually subjecting you to symptoms and potentially damage from the deficiency.
No overdose issues have been found, even on twice daily jabs. It is just plain wrong about the placebo effect and just shows their ignorance and lack of will find out the facts.
I have been injecting daily for nearly 5 years and am still improving following long term deficiency. Some people have been on daily jabs for decades to good effect.
You should have your jabs often enough that you don't get symptoms as symptoms are your body's way of telling you there is something wrong and needs fixing.
Try not to worry, I have had twitches now for 18 months. They are much less though than they were. They started around the time I found I was B12 deficient but I don't know that it was the cause. If you looked on any forum for any disease or disorder you will find those who twitch. It's just one of those things.
I have used homeopathic Magnesium Phosphoricum which I order online but which you can get at Whole Foods or a health food store. Get in at least 30c potency which I took once a day till my twitching stopped. Good luck!
I use a magnesium oil spray to spray on my skin to correct magnesium deficiency because the magnesium tablets give me the trots. I also have epsom salts baths or soak my feet only which does the trick. Since I have been doing this I don’t get the eye twitches and other symptoms. Worth a try?
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