Hi there I have been referred to neurologist for investigation into my symptoms. I was diagnosed with PA 20 years ago and have been receiving 12 weekly injections. Some 4 years ago I was seen by another GP (whilst out of my home area)with a numb area to to my left foot, which has not gone away or improved, he also tested my foot reflexes and said that they were abnormal, again still there. More recently I saw my regular GP, as I have felt as though there is a Co-ordination problem between my brain and my feet, which manifests itself in me feeling unsure of my footing, ungainly, and unsure, My GP did a few simple tests and I could not place one foot in front of the other in a line without falling to one side., hence the referral.
I am unsure if the above is connected to more worrying physical symptoms that have just started, namely that I am suffering from muscle pain at the base of my spine which happens when I change position from sitting to standing and causes my whole lower body to stiffen and shake slightly, but worryingly muscle weakness in my upper arms and shoulders, which are very painful, this is more apparent in my left arm/shoulder. My feet are still non responsive to what is, quite hard stimulation , and just feel numb?. More worryingly my right foot is icily cold and takes some time to become warm, even under covers.
The pain and numbness are gradually wearing me down, and ibuprofen helps, but I am still incapacitated, and in pain. Are these connected does anyone know or have experience of similar, and could anyone please advise what to expect from my consultation, which I’ve had to wait 6 months to get(no worries about that), but don’t want to waste potentially blathering on about other unrelated symptoms.
Thank you.
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Tuppence22
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It's simple. You need more frequent injections. Getting your doctor to agree to to them is a different story. From what you said he doesn't know much about B12D.
Don't wait any longer to see a consultant. In any case it is very likely the consultant won't connect your symptoms with B12D.
What you are going through is nasty and it won't get better. You might even suffer permanent damage. You need to act now. I'm afraid you will have to self inject. I'm lucky and can take oral B12 but no doubt someone on this forum will echo my advice and give you instuctions on how to self inject.
I'm not saying that you shouldn't see the consultant. It may not be B12D causing your problems. However B12 is non toxic so you can't cause any harm by self injecting. But what you describe are classic symptoms. I had the same problems with coordination. Which went away with B12.
There are a lot of things that can cause neuropathy - may be that B12 is involved but also may be that it isn't the only thing going on, so try to keep an open mind, particularly as it is 20years since you were diagnosed with PA. The asymetry of the symptoms is also something that doesn't obviously fit with PA/B12 deficiency.
I suggest you get hold of the local B12 deficiency guidelines for your CCG or Health Board and compare info in them with BNF hydrocobalamin link and NICE CKS and BSH links below.
BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)
"please advise what to expect from my consultation"
I had difficult experiences because the neurologists I saw lacked knowledge about B12 deficiency. I hope your neurologist is kind and caring and has done some homework on PA and B12 deficiency.
Make sure you are well prepared for any appointments in case you meet one who hasn't done their homework.
"suffering from muscle pain at the base of my spine"
Do you have any other symptoms affecting spinal area eg pins and needles, insect crawling feelings (formication), numbness etc. Make sure the neurologist has a list of all your neuro symptoms and definitely include any that affect your spinal area.
The neurologist should be aware that B12 deficiency can potentially affect the spine.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I would expect your neuro to at least carry out some basic neurological tests eg Romberg test.
Videos of Romberg test and other neuro tests can be found on Youtube.
Worth asking them to check your proprioception sense. This is awareness of your body in space. Proprioception problems can be associated with B12 deficiency.
If balance is worse when your eyes are closed, it's dark or view of surroundings is blocked that is suggestive of possible problems with proprioception.
Have you got any recent results for folate, ferritin (or other iron tests) and vitamin D?
Forum members often report deficiencies in these.
If you can wade your way through my very detailed replies on threads below you may find something helpful.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Grateful!! A Neurologist worth keeping! 
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