So today was neurology day. He said he cannot find anything physically wrong but my reflexes are quite sharp and I very spectacularly failed the Romberg test - could not stay upright for even a fraction of a second. He says b12 should have helped and he wants a scan to see if there is any permanent neuro damage. I mentioned sacdc and he said that would improve with b12 so he is looking for a scar on my spine that will not improve. I had 6 vials of blood taken for numerous bloods incl mma. Several of the tests are for lupus so either he is ruling it out or suspects it or maybe that is because the GP wants me to be checked for ME/CFS as a result of B12 def. He was really nice and very thorough. It was not the lead consultant, which I wanted as he also works in the private hospital and I have been told he is good, but still I saw a nice guy.

He asked if I have memory problems and hubby interjected at that point - told him that I have had those problems for years and explained the kind of problems I have

He did say he doubts the N2O at work worsened my def as that would take years of exposure not a few weeks - unless I am particularly sensitive - well I am a delicate little flower.

I finally feel that somebody has listened and agreed to do tests, the gastro and haemotologist refused point blank. The complaint I made about them is being investigated still - now if it can just carry on until I have results for all tests then I could add any diagnoses I receive to it to prove they should have listened to me originally. This is a small step forward as a lot depends on what the neuro does when I get results but it is a step further than I was.

17 Replies

  • Glad to hear you had a 'good appointment' . Lets hope the results give a positive outcome for the right treatment for you.

  • So pleased that it went so well for you. You obviously found someone who listened and was thorough. All then best . 'M'

  • Good that your husband "joined in" sleepypuss - I always take my wife with me.

    Many years ago she perfected her "Dinner lady look" which could stun to silence a schoolfull of rowdy children and even now can put doctors in their place with one glance :D

  • It's really good to hear of someone who has had a positive experience with a consultant. Hope your small step forward is followed by giant leaps! And good luck with the outcome of your complaint.

  • Hi there! I too had my neurology appointment yesterday. He did all the reflex tests etc and seemed to think that was all ok. He said he will send me for a scan to rule out MS but he thinks it's highly unlikely. I made a list of all my symptoms and he said the likelihood is its CFS/ME. We talked about whether the symptoms were related to B12 deficiency but he said as my results were so high there was no way it could be related. I've been researching CFS and it's quite frustrating as there doesn't seem to be much we can do about it! Any advice you recieve on the condition I would appreciate your advice! Thanks xx

  • Of course. I think there is little that can be done for me/cfs. Gp told me you deal with it by pacing and positive attitude - you try pacing while doing a medical degree (placements and uni), having 2 teenagers (1 autistic and 1 needing lots medical appts for uc and psc), living away from family, a hubby that is often away with work, and fighting for gps to recognise the autistic son needs b12 and neurology referral plus to top it all his mh took a turn for the worse this week when he had a break down and now I am communicating with college as they try to help. When I am supposed to rest I do not know.

  • I had a similar consultation with my neurologist. Having MRI scan tomorrow. He said it couldn't be b12 related as I am getting injections. Hope he doesn't say it's CFS. Lazy diagnosis. As far as I can see chronic fatigue is a symptom and not a diagnosis. What are your symptoms Clarky78?

  • Extreme fatigue, tingling in hands and feet, muscle ache, brain for, struggle to get sentences together at times, Burning sensation on skin to name a few!

  • I suspect that many people with a CFS diagnosis have something else eg B12 deficiency, thyroid problems etc.

    CFS is supposed to be a diagnosis of exclusion eg when they have checked for all other possible conditions. The problem is that it can be difficult to persuade GPs etc to carry out all test necessary to exclude other diagnoses.

  • I have been self injecting every other day for nearly 3 months and some of my symptoms are getting better. The ones that are worse, in other words possibly not connected to b12d are very painful muscle spasms, tingling etc particularly in legs. Very difficult to walk today. Maybe the MRI will show some spinal problem otherwise I will be on the CFS scrap heap!

  • How's your potassium? B12 supplementation can lower potassium sometimes. I had it, it was awful!

  • I drink coconut water do hopefully ok.

  • Have they tested you for Lupus?

  • Hi,

    There's an info sheet about "Sub-Acute Combined Degeneration" in the PAS library section pernicious-anaemia-society....

    "Several of the tests are for lupus"

    Have you had tests for Hughes Syndrome?

    One UK expert is Professor Graham Hughes.

  • The neurologist asked me about clots, pregnancy etc but no the bloods listed for it were not on my list of tests.

  • As far as I know I have not had a clotting issues and not had miscarriages (2nd son was a threatened miscarriage but thankfully went beyond term).

  • I read that "livedo reticularis" can be associated with some auto-immune conditions including lupus and Hughes syndrome.

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