Problems with GPs re B12 deficiency and neuropathic symptoms

[wobblw]

So far have had 3 x 3monthly B12 injections and now added Folic Acid 5mg prescribed by GP.Another GP send me for MRI at one hospital but found on seeing a neurologist at another hospital found it was not the correct procedure and the hospital in question does not come under the neurologist's area so a complete waste of time and NHS money. Now have to wait another 5/6 weeks for MRI radioactive dye and many other tests as well.The neurologist has suggested I make a complaint at the surgery but the GP who ordered the first MRI is a senior Partner of the surgery and I dont want to find myself looking for another medical practise.

My pins and needles are very bad and have problems with my balance particularly on stairs.Have also gone deaf in one ear and my hair dramatically thinning.My mother was ill with pernicous aenemia wrongly diagnosed with parkinsons for several years and do not want to go down that road.Am suplimenting B12 1000ugdaily and potassium and magnesium.as I have severe cramp at times.Have had several gastroscopies pain in my right side since surgical removal of gallbladder years ago so not sure if I have absorbtion problems.

Are there any other tests I could have privately as the neurologist seems rather concerned and worried about the length of time the NHS takes to get through what she has ordered.Have printed of guide lines ref NICE to give to my GP! Many thanks wobble

[Gambit62 Administrator]

the fact that you have had your gallbladder removed is a red flag for damage to the ileum, which would result in problems absorbing B12 - sure that is mentioned in the BCSH guidelines which your GP can access through the BNF but you can also access here - so may be worth underlining that section

onlinelibrary.wiley.com/doi...

[wobblw in reply to Gambit62]

Just an update following my recent visit to my GP (who also owns the practice) and his dismissal of B12 deficiency for vertigo etc and his surprise at having reached a neurologist without him bothering to look at my notes,I now have received a letter from neurologist following a nerve conduction study.In view of the findings she wants to do other tests and asked if I would take part in a special interest clinic run at Oxford.More than happy to do so but would like to know what is ' possible inflammation in the vessels supplying the nerves'?Still taking oral B12 and folic acid and found 5HTP is helping a bit with sudden anger flareups which I hate most of all Glad of all the advice and support from everyone

[fbirder in reply to wobblw]

It sounds as if your neurologist may suspect you have vasculitic neuropathy. It is caused by inflammation of the blood vessels (vasculitis) that supply the peripheral nerves.

Often they will want to do a nerve biopsy, where they take a small section of nerve from the side of your foot, to be sure. Treatment tends to be with steroids to reduce the inflammation.

If the vasculitis is systemic then other organs can be affected.

There are several causes of systemic vasculitis, most of which I'm not at all familiar with.

[wobblw in reply to fbirder]

Thanks fbirder just looking up vasculitis which I assumed was to do with blood vessels and you have kindly answered in the same vein SORRY its not at all funny really! Will look up what could be causing this and if there is anything I should be doing to help reduce it,would prefer nor to take steroids but may not have a choice.I hope my neurologist comes back to me and the GP so we both know what treatment to take.Still taking B12 orally and folic acid as now find 3 nieces with B12 deficiency and and my youngest sister also so it is a family condition.Do appreciate your help x

[Wowo23]

Hi wobble, I'm so sorry for what you're going thru. I've read a lot on PA and neurological symptoms. I heard that it depends on how long your b12 was low. Some say once found and injections started, they had relief of most symptoms, but tingling ect...was still there. Have you had your intrinsic factor checked? Instrinic factor will tell if you have problems absorbing b12. Have they told you what your newest b12 levels are? I didn't know what was wrong with me. I was always off balance, ringing in my ear, blurred vision, brain fog, tingling in hands and arms and got upset very easily. My b12 was 93. They then checked my instrinic factor. Normal range 0.0-1.0. Mine was 98. I was on daily injections and now weekly for life. My b12 now stays in 600 range where my oncologist wants it. I still have tingling and ringing in my left ear. I was sick for quite a while and think the damage was done to my nerves. I haven't seen a neurologist yet. Have other treatments and tests going on. Plz let me know what happens

[wobblw in reply to Wowo23]

Hi Wowo23 After wasting my time seeing my GP who hadnt even looked at my notes he seems to think its vasculitis as I am getting on in years.Having calmed down and realised I need to get more tests done ie homocysteine intrinsic factor etc I will ask can I order these throught the nurse as I have an appointment soon. If not will get them done privately or ask to see a haematologist.Have not had a recent blood test done.My neurologist has asked if I will take part in tests with a 'special interest team ' following results of nerve conduction tests so happy to take part as my next appointment with neurologist is end of February.How are you doing as far as tests and do you still have tingling, as my foot and leg are a nightmare in bed.!! Think I will have to self inject as GP was horrified that I asked for more than every 12 weeks.Thanks for your message cheered me up we are not on our own.