as GP insists tha all my problems are Vasculitis and wants me on steroids which I have refused.Have spent hours going through autoimmune diseases and anti-inflammatory drugs andthen realised my poor mother was on anti cancer drugs as the doctor took her off B12 injections again saying it was vascular.I have read that B12 deficiency can damage the myelin sheath of nerves and this in itself will eventually cause nerve damage and the resulting numbness pins and needles and gradually cause damage to many parts of the body.Have printed off all the details I have found as back to see neurologist .Have decided to SI if she does not consider my research but wondered has anyone any advice about it.Glad I have someone to talk to that doesnt treat me like an idiot!
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Have you had tests done for vasculitis? Your Dr shouldn't just be presuming it is that.
My mother has vasculitis and was misdiagnosed for a very long time. Eventually she had a kidney biopsy done. I believe this is the only true way to determine that it is this.
As, for b12 deficiency damaging the sheath etc. There are a number of very worrying symptoms that come with prolonged b12 deficiency. I have been suffering with a lot of them myself for the past 5 months. I had an ongoing battle with my GP who has now written me a letter stating that even after the advice of a Neurologist to administer them on an empirical (trial) basis, they are still not willing to treat me I've been paying to get mine done for the past 8 or so weeks at a cost of around £800 if you include the travel (This is due to all my test results coming back normal, but I began supplementing b12 prior to tests out of desperation which skewed my results. How much do i regret that now?)
I have however since seen a private GP, who has agreed with me and agreed to treat me. But still at a fair cost.
The ironic thing is, (after my GP claiming I have NO b12 issues) I requested to see a nephrologist to rule out vasculitis (As they are so adamant it's not to do with b12). And they have refused that too, telling me... "You don't have vasculitis"
Sorry, I digress... But my point is, ask for vasculitis tests for confirmation, and if/once it's ruled out, MAYBE they'll look deeper into b12 issues. There are ALOT of crossover symptoms, hence why I'd like to rule it out for myself too.
There are plenty of links on here for advice on self injecting b12, but I'll leave the more clued up people here to add any helpful information they can provide along with any links.
You came to the right place though. You'll get plenty of support and kind words here, and absolutely NO-ONE thinking you're an idiot.
Dan10. Have you thought about self-injecting with B12? Many here are forced in to this when their GP's refuse to treat or prescribe injections frequently enough for effective neurological repair or symptom control.
Shocking that your GP is refusing to treat you - even after being advised to do so by a neurologist.
Put up a new post if you want advice about reputable / quality assured suppliers for B12 etc. (Injections cost approx. £1 - goodness only knows how much you're currently being forced to,pay).
Hi Dan, Thanks for all your info and I have really worried about vasculitis as my mother was also diagnosed with it even though she was known to have B12 deficiency for many years.Can remember as a girl my mum eating raw liver and we as a family having liver obviously cooked at least a couple of times a week.She did have monthly injections and could bring the ampoules with her if she came to visit and was able to go to my GP and have her injections done.How things have changed and not for the better!
I believe my mother was wrongly diagnosed with vasculitis as she ended up on an array of 'cancer' drugs and autoimmune drugs and I realise with moving to a care home her B12 injections were dropped.How angry I feel for my poor mum who suffered with her legs so much pain,many symptoms which I now recognise and died with dementia.
However have recieved copy of a letter my neurologist has sent to my GP informing him that all tests including Brain and Spine MRI scans do not show any changes to suggest vasculitis and she is pleased with the good news.I am so relieved just hope the GP now understands what I have is simple to treat and in the grand scheme of things is reasonably cheap to remedy.Otherwise I shall SI and hope I can afford it for as long as possible.
Thanks for your advice and news glad we can all get information and just knowing there are others out there in the same frustrating situation makes me want to fight for our rights!! I am back with the neurologist next week will let you know what she says.
Wow, what an ordeal for both your mother and yourself
Let's hope things move on for the better in the future and we're not in the same situation 100 years from now with Doctors fighting us every step of the way.
Thanks Dan10, I will let you know hoow I get on with neurologist and also have an appointment with Neurosciences Laboratory in Oxford again referred there by my neurologist.Long journey but I hope they are more in the picture.
Hope you get somewhere with your GP and nurse.I believe PAS can write to the GP on your behalf if he refuses to co-operate.Hope you get some sleep tonight
Hi Wobbly. Just had a quick scan of your previous posts and it seems like you're having a bit of a tough time.
Sorry, I don't have a lot of time right now, so...briefly...
I note you have a family history of PA and have had your gall bladder removed, both of which can result in absorption problems. The history of PA means that you are more likely to also suffer from autoimmune conditions - like PA - and vasculitis.
So..first...you have neurological symptoms and so should be on the intensive regime of B12 injections (after six loading doses, injections every other day until no further improvement). Your family history of PA and your gallbladder surgery leave you at high risk of B12 deficiency and where neurolgical symptoms are present, intensive treatment should begin immediately. Though your previous seurgery were treating you, suspect they were under-treating your B12 deficiency (I.e. not getting the intensive regime - see BNF for treatment guidelines - attached in links below).
It’s entirely possible that you have both B12 deficiency (because of the gallbladder surgery and/or PA) and vasculitis. And each need different but simultaneous treatment.
It’s also possible that your neurological symptoms are due to under-treated B12 deficiency - though most GP's and consultants fail to realise this because they do not know enough about B12 deficiency - or the potentially devastating neurolgical effects this can have.
Because you have neurolgical symptoms it's important that intensive treatment is not delayed, since (as you recognise) this can lead to a condition called subacute degeneration of the spinal cord. This develops as a consequence of in-treated or undertreated B12 deficiency. Your GP may not be aware of this.
Second - have you had a full antibody screen? Those with one autoimmune condition often (but not always) develop another, as they tend to travel in clusters.
Also - vasculitis can be autoimmune related - usually diagnosed via raised ANCA antibodies (or biopsy - usually done following raised ANCA). In addition, vasculitis is usually treated (at least initially) by a rheumatologist (Rheumy usually wants to rule out other organ involvement - though I'm certainly not suggesting you have this).
Vasculitis can not be properly diagnosed by GP - needs proper tests and investigations (as above) - steroids (and perhaps,other medications) may be necessary if properly diagnosed, more below...
If vasculitis is suspected, it's usual to be referred to a rheumatologist for further investigation and treatment...more especially if the is a family history of autoimmune conditions.
Not sure how much information about PA and B12 deficiency you have, so going to post some links to information that might help you (excuse if you have them already):
Here they are - looks like a lot but most are one page long - and all certainly worth reading:
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
About the B12 deficiency - unfortunately this is not well understood by most GP's and sadly, consultants are not always much better...so keeping fingers crossed that you get a good one 😉.
Put up a new post if you have any more question after reading through the information.
Sorry if this sounds a little stilted...not a lot of time right now so rushing....
👍
P.s. You're certainly not an idiot. Know exactly how you feel 'cause I went through something very similar. (B12 deficiency (under-treated), vasculitis, undifferentiated connective tissue disease...
Sorry so long to come back to you and thanks for all your informmation and kindness its a bit overwhelming to have so many people being so kind and thoughtful.Will let you know outcome of my visit to my neurologist on wednesday Many thanks
No problem...and yes, I was overwhelmed when I joined and it happened to me...restored my much jade faith in the goodness of humanity...and gave me the strength (and evidence 😉) to carry on fighting my own corner.
Very best of luck wobble...keeping everything crossed for you.
Thought I would let you know result of going to neurology clinic at John Radcliffe Hospital at Oxford arranged by my local neurologist mainly to reassure both me and herself about her findings.
I had a belated 12 weeks shot( nearly 14 weeks due to shortage of practice nurse} and the nurse looked up the letter sent to GP from Oxford neurologist.Have to go to ENT as I have balance issues but best of all the Oxford neurologist recommended 4 weekly injections not 12 weeks.My nursed messaged my GP and later rang me to say he agreed and we booked next one for 3 weeks time.Feel its a step in the right direction but now in a quandary as I planned to SI every other day if I could.The reason being I had a great day after my B12 injection given by the nurse.Set off the following day and several miles into a car journeyrealised my pins and needles were almost gone and was happily driving without my recently acquired driving glasses no blurring or squinting.Felt happy confident and in control.Was the change to do with the B12?However the pins and needles are back and mind fog after 5 days since injection.Yes I have neuropathy and there are no signs of anything sinister to worry about physically,his findings " idiopathic causes"You tell me!
Am supplimenting with subligual 2x1000ug each day but it isnt helping .Value your advice on what to do next.Many thanks
Great news about the increased frequency of injections from your GP and that there's nothing else going on with the neurology 😀.
But here's the thing (as you probably know)...the B12 injection regime in the UK for those with neurological symptoms is injections every other day until no further improvement.
The fact that your symptoms resolve and then return before the next injection is due is an indicator that more frequent injections are needed.
I was in a similar situation to you - my GP did not give loading doses and would only 'authorise' B12 injections every eight weeks - even after reviewing all the evidence I provided about treatment of those with neurological symptoms. So...I now have an eight weekly injection at the surgery (to keep in the system) and self-inject, as needed. Initially I injected every other day but have now settled on a once a week injection, and that seems to work for me.
You can do yourself no harm by injecting every other day - according to all guidelines it's the B12 regime for those with neurolgical symptoms. This regime is advised until there is no further improvement in symptoms.
Once this stage is reached, the frequency of injections can be reduced: the ultimate aim is to time the frequency of injections so that you have them before the symptoms re-occur. The frequency required is different for every individual, ranging from injections every other day to injections every three months (though every three months is not sufficient for many people). It's just a question of working out what works best for your symptoms and your body.
Sublinguals work for some, but not for others - they did nothing for me, so I stick to injections (100% absorption as opposed to 1%-3% absorption from sublinguals etc.).
So, based on the fact that there is no other known cause for your neuropathy and that it's relieved by B12 injections, think I'd err on the side of caution and try the intensive regime of B12 injections (every other day) and see how it goes.
Shame that your neurologist didn’t consider this and advise your GP accordingly 😉.
Good luck and thanks for the update 😀
P.s. apologies for the slow response - been having issues with reply notification so having to back-track through the forum and try and spot anything that's outstanding 😉.
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I've been paying to get mine done for the past 8 or so weeks at a cost of around £800 if you include the travel (This is due to all my test results coming back normal, but I began supplementing b12 prior to tests out of desperation which skewed my results. How much do i regret that now?)
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