Hi everyone, so I’m used to bouts of my toes really hurting, usually for a few weeks at a time and then it eases off, I think that’s referred to as peripheral neuropathy isn’t it? I was diagnosed in 2012 and this has been a regular thing for me. But more recently I’ve noticed that I’ll have an area of my leg, first it was just above my thigh and now it’s an area on my calf that has become really sensitive, to the point where it’s painful, having clothes on it is painful and when I touch the area it’s like a burning feeling. Even when not touching it it’s bothering me and causing me pain, does anyone else have this? Is it an associated symptom?
I’ve had years of being totally fine and tolerating 12 week jabs but I’m now on 8 weekly jabs and have big episodes of feeling dreadful, clawing at my face because I’m convinced there’s something crawling all over it, palpitations and awful painful toes, and now this pain has started, I’m so confused as to why I’m feeling worse.
Thanks for your help on here, I never know who else to turn to
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ExploringWonderland
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I wonder if you are experiencing extra symptoms because you are now getting injections more often and perhaps some of your peripheral nerves are starting to heal.
Some people on forum report that when they start treatment or increase frequency of treatment they experience an increase in symptoms for a while.
Did you have neurological symptoms prior to diagnosis and starting treatment?
If yes to neuro symptoms .......
UK recommended treatment for those with neuro symptoms is
A B12 loading injection every other day for as long as symptoms continue to improve then an injection every 2 months.
There is no set time limit for the every other day loading injections. They could go on for weeks even months if symptoms are continuing to improve.
How many loading injections did you have when first diagnosed?
I suspect you only had 6 over 2 weeks.
6 loading injections over 2 weeks followed by an injection every 2 -3 months is the recommended treatment pattern for those without neuro symptoms.
If you had neuro symptoms prior to starting treatment in 2020, I think there is a chance you were under treated for several years.
If you did not get the appropriate pattern of loading injections at start of treatment, maybe your GP could be persuaded to do a second set of loading injections?
Vital to get adequate treatment or there is an increased risk of permanent neurological damage including problems with the spinal cord.
CCGs, Health Boards, NHS hospital trusts will have their own local guidelines on treatment/diagnosis of b12 deficiency which sometimes have not been updated for years and sometimes do not match what is in BSH guidelines.
I recommend you get hold of the guidelines for your part of UK and compare them with BSH, BNF and NICE CKS links in this reply.
I hope you are not in area below which has a poor reputation on this forum.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms. Link has letter templates. My feeling is that queries about treatment are more effective when put in a brief as possible, polite letter to GP.
Letters are harder to ignore in my opinion and my understanding is that letters to GP are supposed to be filed with patient's medical notes so are a record of an issue being raised.
There is a helpline number that PAS members can ring.
If you already have a PA diagnosis, I suggest getting written proof of diagnosis eg copy of PA test results, copy of specialist's letter giving diagnosis, copy of medical notes that show your diagnosis etc
Some on forum previously diagnosed with PA, have had injections stopped and when they queried this have been told there is no record of their PA diagnosis in their records.
B12 book I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link in this reply for up to date info.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, more B12 articles/documents, useful blood tests and a few hints about dealing with unhelpful GPs.
Thanks for your reply, neuro symptoms started about 3-4 years ago but were fairly mild and I kind of just took it that it was part of how I was going to feel so tried to just carry on but in the last 2 years they’ve definitely gotten worse. I was very unwell in February this year, my memory went, I couldn’t say sentences properly, the vertigo and pain in my feet was awful. I was off work for 5 weeks and that’s when they changed me to 8 weekly jabs. I don’t feel like I’ve fully recovered since then! I can’t imagine the stress of 2020 has helped with that though! Thank you for your advice, I think I’ll chat to my GP
I suggest you consider putting concerns into a short, well thought out letter. See letter writing link in my other reply.
Letters allow you to express yourself clearly and avoid face to face confrontation with GPs.
Letters to GP could contain test results, date of diagnosis, symptoms list, relevant medical history, extracts from or references to UK B12 documents, request for referrals eg neurologist etc
Some GPs do not react kindly to being challenged even if it is very politely so be aware that GP/patient relationship may come under strain and have a back up plan if it does eg another GP surgery to go to.
The fact that your neuro symptoms started a few years ago suggests to me that your treatment at the time (12 weekly injections) may not have been enough for you.
I am surprised you have not already been referred to a neurologist.
Do you have any balance issues or a strange way of walking (unusual gait) or symptoms that affect your spine?
If yes, you could draw GPs attention to the possibility of SACD (see link in other post).
I am not saying you have this... just that GP needs to be aware that it is a possibility in people who are B12 deficient.
Folate deficiency can also lead to SACD.
Folate, Iron
Have your folate and iron levels been checked recently?
Folate deficiency can lead to neurological symptoms in some cases.
Do you keep a daily symptoms diary that tracks changes in symptoms over time and if and when treatment is received. It can be useful evidence of improvement or deterioration in symptoms to show GP/specialist.
More about PA
PA is an auto immune condition. Having one auto immune condition increases the chances of developing others.
If you have a PA diagnosis, I think your GP should be on the alert for other auto immune conditions developing. Quite a few on here also have thyroid symptoms and these can lead to neurological symptoms in some people.
Best advice I ever got was .....
to always get copies of or access to all my blood test results.
As well as B12, folate and ferritin (or other iron tests) may be worth looking at full blood count results.
Have you been referred to a neurologist? With any change it's worth getting more investigations.
I hope 8 weekly brings some improvements for you.
I have pain in the joints of my toes and a bony lump appeared on a finger joint. . The burning was one of the earlier things to go for me. I have aching hips everywhere at times like the flu.
All new with b12 deficiency.
I'm on more frequent b1 injections. Never did get to 3 monthly.
Thanks for your reply, I’ve not been referred to a neurologist, the symptoms have definitely gotten worse in the last few months and I’m so much more aware of the pain and the burning affecting my daily life. I think I need a trip (or a phone call!) to the GP
You have had some excellent, well-informed responses.
Just to add some other things to consider, on a just in case basis, ...
When people post about the feeling of burning, especially of feet, I quite often post this link.
It is getting on a bit but nonetheless it does give an overview of the causes of burning feet. And I have not seen a more recent article which I could use instead.
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