I now have a date for my neurology appointment and am eager to make the most of it. So, wanted to ask for any and all advice anyone can give me please.
As a 53 year old woman with a history that suggests I have lived with PA since puberty, I was diagnosed about a year ago (hoorah!) and given a loading dose of B12 jabs followed by three monthly boosters. These had a miraculous effect, to the point where I had to work hard not to be overly annoyed at never before having the words 'vitamin B12' uttered to me by the million doctors I had seen previously. Still - thank you world for the one female doctor who suggested it and got me tested - sadly, she has since vanished from our local health centre never to be seen again.
Since my injections began, my hair - which I began to lose at the age of 14 and had to shave off completely to maintain any semblance of dignity by the time I was 45 - has even begun to grow back with new growth visible to my hairdresser for every B12 jab I've had since. This, and my rediscovered ability to walk, think and talk like a normal person again, almost every day, makes me believe fairly fully that the diagnosis was correct - even if questions have been raised since by other doctors.
During the first six months of injections, I did find that I was unable to last longer than 2 months before my neurological symptoms returned with a vengeance. Thanks to information I found on the PAS website (thank you so much) which I printed out and took with me, I was able to persuade a locum doctor to both increase my jabs to once every 2 months and book me in for a neurology appointment. Of course, that was a fair while ago now and I'm happy to say that my symptoms have continued to dramatically improve since then. I do still suffer during the final week before my 2 monthly booster jabs and have to manage my life accordingly, but one week or so every two months seems a small price to pay at this point.
I have, in the distant past, had Electromyography (EMG) tests when I was in Sweden in my teens for unknown causes of muscle numbness, joint pains, tripping and falling and even a temporary partial loss of my ability to use my legs altogether for a random few hours - but that seems to be connected to the onset of hormones and bad teen habits. Having children seemed to help me out a great deal, although I have since had a fair number of blood tests, neurological tests, MRIs and spinal taps to test for suspected MS (which two of my paternal aunts were diagnosed with), Hashimotos and other autoimmune conditions over the years since. I even had a biopsy of the skin on my left thigh where I have had a patch of numbness for most of my life. However, none of these came up with any real information beyond negative diagnoses. As a result, I have spent much of my life feeling like a time waster and hypochondriac.
Of course, most recently, I've also had the whole muddle of peri-menopause symptoms to deal with so the PAS info was vital to getting the doc to move past his offer of HRT and provide the more regular B12 jabs. It is notable that my hormonal symptoms ramped back up to what might have been expected as soon as I received B12 too. I definitely rediscovered my 'femaleness' and feel as though my menopause is now 'on track' with normality if that makes sense.
Now I have my neurology appointment in site, I am filled with paranoia and concerned that my improvements in symptoms will mean I'm labelled as a time waster yet again. And yet, I don't want to waste this opportunity to properly understand my physical situation and ensure my neurological symptoms don't ever get any worse. I am certain from my research that I do have subacute combined degeneration of spinal cord and, while it has definitely improved dramatically, I'm not sure I can risk it getting any worse, ever again. My experience suggests that, even with treatment, I am likely to get ever so slightly worse over time if left as I am. Not to mention the likely impact of entering full menopause.But how do I relate all that to a busy doctor I've never met before?
I have read that I am not alone in this concern. Many of us are now facing long awaited appointments with improved symptoms.
I was amazed at the effect that printing out exact information from the PAS website had on the locum doctor. But he was a highly overworked locum and glad to have a clear path offered him. Would doing something similar work for a specialist like a neurologist or would it simply annoy them? If it might work, are there any particular leaflets and/or paragraphs of information anyone can point to - or has pulled together themselves in the past - that might be a good starting point?
I know I need to advocate for myself but I also know I cave easily in the face of medical intellect with opinion often based in a very different perspective.
So I am reaching out for your help if you have any to offer?
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sarahmlawton
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I'm going to post a lot of links below which hopefully will have some useful info.
I am not medically trained. It took me many years to find out what was wrong with me and I had some difficult experiences with medical profession along the way.
I think my main piece of advice would be to be well prepared for your neurology appointment. Hopefully you will get a neurologist who understands the effects of B12 deficiency but not all of them do.
Do some B12 homework if you have the time and energy in case they haven't.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
One thing I would suggest is asking neurologist to check your proprioception sense as problems with this can be associated with B12 deficiency (and sometimes with folate deficiency).
Proprioception is awareness of your body in space. I think it is also called position sense. If you search online for "proprioception B12 deficiency" you should come across research/medical articles that explain it in more detail.
People with proprioception problems can sometimes be clumsy. If you have particular problems with balance when your eyes are closed, it's dark or your view of your surroundings is blocked then worth explaining this to the neurologist.
For example, I used to fall off the pavement when someone walked directly towards me and my view of what was ahead of me was blocked.
My balance was okay during daytime but if I went to put something in the compost bin at night, I couldn't walk straight.
The reason I'm mentioning proprioception in particular is that I saw at least 5 neurologists and I'm not sure any of them tested proprioception fully or asked me if my balance got worse when it's dark.
Following tests should only be carried out by a doctor at medical premises due to risk of loss of balance.
Two tests that can help to assess proprioception are
1) Romberg test
2) Walking heel to toe with eyes closed
Proprioception problems are I think more likely to show if patient has closed their eyes. If neurologist doesn't get you to do any tests where your eyes are closed, might be worth asking them directly if your proprioception sense has been tested.
Videos of these and other neurological tests on Youtube.
I think it's worth listing any symptoms that affect your spinal area when you talk to neurologist.
B12 deficiency can in some cases lead to damage to the spinal cord. I am not saying you have this, I am not medically trained but I am saying that your doctors should be aware that this is a possible consequence of B12 deficiency.
I had spinal symptoms such as
pins and needles in spine
sensation of cold water trickling down spine
insect crawling feeling in spinal area (medical term formication)
pain and discomfort in spinal area
Symptoms Diary
You may find it helpful to keep a symptoms diary which tracks changes in symptoms over time and if and when you receive treatment. This can be useful evidence of deterioration or improvement in symptoms to show GP/specialist and may help them to work out how often you need B12 injections.
Treatment
"given a loading dose of B12 jabs followed by three monthly boosters. "
"able to persuade a locum doctor to both increase my jabs to once every 2 months "
BNF hydroxocobalamin link below has two treatment patterns
My understanding is that as you have neuro symptoms, you should have been put on the second pattern from the start of your treatment.
How many loading injections did you have at start of treatment?
I suspect you only had 6 over 2 weeks which is recommended for those patients without neuro symptoms.
BNF recommends that patients with neuro symptoms have a B12 loading injection every other day for as long as symptoms continue to improve. There is no set time limit as to how long these every other day loading injections can continue for. It could be weeks or even months of them.
I think you probably have a good case for asking to have loading injections to be restarted this time according to BNF pattern for those with "neurological involvement" if you only had 6 when treatment started.
I'm going to add more in a bit so check back later.
UK B12 documents
BSH Cobalamin and Folate Guidelines (whole document)
I suggest you take a few days to sift through all of this information as it can be overwhelming.
One of the things I suggest to people on the forum is to get hold of local b12 deficiency guidelines. Sometimes local guidelines differ from national guidance and the treatment a GP or specialist prescribes/recommends could be influenced by what is in local guidelines.
Each CCG/Health Board/NHS hospital trust in UK is likely to have their own local guidelines on treatment/diagnosis of B12 deficiency. If you find guidelines for your area, I suggest comparing them with info in BNF, BSH and NICE CKS links so you can see the similarities and differences.
To track down local guidelines in UK...
1) Try a search of forum posts using terms "local guidelines" as some have been posted in the past.
2) Try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or "name of CCG/Health Board B12 deficiency treatment algorithm".
3) Submit a FOI (freedom of information) request to CCG/Health board asking for a link to or copy of local B12 deficiency guidelines.
If you're in Wales, I haven't been able to find any B12 deficiency guidelines for Welsh health boards online. I suspect they are on staff intranet systems and if you're in Wales, you may need to submit a FOI request to Health Board to get hold of them.
These local guidelines are reviewed every few years so worth keeping an eye on them, especially as there are moves across UK to put more people onto high dose oral B12 tablets as an alternative to B12 injections. While some on this forum can manage on high dose oral B12, there are others who find oral tablets ineffective (including myself).
Some local guidelines are not helpful so worth knowing what you are up against.
I hope you are not in the UK area discussed in the blood post below.
Local MPs/devolved representatives may be worth talking to if struggling to get adequate treatment.
A few people go to the Press/other media.
I think of this as the nuclear option as likely to permanently change doctor/patient relationship but can be effective in some cases.
Best piece of advice I ever got was to always get copies of all my blood test results. Some on forum access complete medical records...can be illuminating to see what doctors have written in the past.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
Apologies for firing so much information at you. I'm a similar age to you and could empathise with you due to what you have gone through.
B12 books I found useful (especially the first two books in list)
"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 hydroxocobalamin link in my other reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Just wishing you good luck, lots of information already given.
As for the neurologist, you never ever know what his/her reaction will be. Just pot luck really as to whether they are clued up with b12 or not, and to if they are open minded in that they will increase injections.
Dont get despondent if the neurologist is not on your wave length, many of us have been called hypochondriacs before, take that with a pinch of salt !
You know how you feel etc.
You do have the option to self inject ! But that is your choice and many here are more than willing to put you in right direction.
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