Pernicious Anaemia Society
14,713 members10,466 posts

It's always a battle

I have been in extreme pain for 7 months in arms and legs and have great difficulty doing anything especially walking. Other symptoms have been appearing over several years. In July I asked for my vitamin B12 to be tested and it came back as 140 ng/L (*180-1000). However not one of the several GP's I saw thought this was low enough to be causing any symptoms despite me ticking many boxes on the PAS symptoms list. I have had many blood tests, all others are reported as normal although plasma viscosity was reported as normal but just a little over the range. 1.80mPa.s (*U1.5 - 1.72).

The GP I spoke to on the phone begrudgingly agreed to 5 loading doses and then another blood test in 6 months. This was in August. I am now seeing a rheumatologist who has tried her best to find another reason for the pain and has now ordered a MRI scan of my spinal cord as she thinks there may be a problem there, also a nerve conduction test.

Today I had to return to the GP (a locum) as I need more pain relief and also though I should have had a vitamin D test and thyroid. She obliged but then gave me a bit of a lecture saying I was obsessed with the idea that B12d could be my problem and she didn't feel it was. I showed her the information for clinicians that Martin Hooper told me to take and also the symptom list. She said they have protocols to follow and in my case that had been done. She looked at the symptom list and said they were vague and could be symptoms of anything. I have taken things into my own hands as I am desperate to feel well and be free of pain and now inject hydroxocolbalamin every other day. Her view was that as I am still in pain after 6 weeks of injections it can't be B12 that is the problem. I've had so many inaccurate comments from GP's including - your B12 is not low enough to cause any problems, Your red blood cells are not enlarged so you don't have a problem, low B12 does not cause pain, people who work for these charities become obsessed, the 5 loading injections gave you so much B12 that you shouldn't need any more. I have given up hoping that they will be able to help me but at least today I got the 2 missing blood tests done.

Today she suggested pregablin to help with pain and the rheumatologist has suggested steroids just in case I have polymyalgia. Has anyone here tried either of these drugs? Do you have any comments regarding these? At the moment I have the strongest co codamol and it does help a bit with sleep but I have been taking it every day for 7 months. I am hopeful that the scan and nerve test will give a better indication of what is going on but it is distressing not to have any understanding from GP's. I am newish here although have spent lots of time reading other people's posts

2 Replies

oh not protocols again! poor you. I have gone from gaberpentin to pregaberlin and I must say it has helped a lot with neuropathic pain and also I seem to be sleeping so well. on the down side is the weight gain, but that's another story. Hang in there Exhausted99.


Thanks, being diabetic and having lost over 2 stone and got good control of blood sugar levels anything that puts the weight back on is not a good thought. I just am not sure what to do for the best. I have managed to put off the steroids until after the scan and nerve conduction test. The rheumatologist has now said she may consider the B12d as being a factor once she sees the results of these tests. Today this GP seems to think it unlikely that these tests will show anything B12 related. So hard to remain positive.


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