Sorry been off the radar for a while. I forgot my password, which took some sorting as I could’nt remember the email address I used originally - sounds familiar. However, I have continued to read similar threads, my heart goes out to all. Well dr’s are still srcatching their heads and are having a meeting to discuss what to do next. Each time I go they say we will send you to a neurologist and the merrygoround starts again. This time I say I have already been to 3 neurologist all acknowledge left sided weakness, unsteady gait, brisk reflexes and various unexplained neurological symptoms buzzing, tingling, altered nerve sensation, extreme fatigue, memory issues, tightness around the chest and to add loss of balance. Unfortunately, the MRI scans have all been clear so no other tests are ever suggested. Where do you go from here when you have previously been diagnosed with fibromyalgia but are told that all the symptoms don’t fit that diagnosis, also you have been diagnosed with hemachromatosis which causes fatigue and spasms and are B12 deficient? So why am I posting? Well, I go back to my doctor on the 25th April, I need to be prepared, do I ask for another opinion or more tests? I am getting dizzy on this merry go round and wonder whether I should just get off.
Hi Loulou, Do I understand your post that you are known b12 deficient? My understanding is that if you are deficient in B12 then the symptoms you experience can very much mimic MS. There is a site called the pernicious anaemia society, where the forum is very helpful. Unfortunately you do need to join to be able to post, but as you are Dxed with B12 deficiency it may be worthwhile. My understanding is that despite recieving the standard number of injections, some people, particularly with neurological symptoms, need far more, some even daily. Have you noticed whether any of the symptoms are relieved or get better after your injection? Leah 
Hi Lelole, I have been b12 deficient for many years and did start as you rightly say with a high dose of b12 over 5 days, then per week and now down to 10 week intervals. Ironically I am now too high. I never feel any relief from the injections so not sure where I stand on this issue, or not as the case may be (stumbling reference ah. ah). The doctors don’t seem to be looking for a link but are at least still looking for some answers. Lou x
In that case, I would really recommend joining the society and asking on the boards there. My mum is b12 def. and she has found it useful. I am sure she said that once you have injections the blood tests don’t mean much. If your mris are still clear it seems like an avenue very much worth exploring. Leah
Thanks for update evry avenue is worth exploring. The list on the PA website has every symptom covered and you are absolutely right I could well be suffering just with a b12 problem. The neurologists currently don’t feel it is just down to 1 particular condition but that my immune system is part of the problem. It is not that ms is not possible it is more that mri’s don’t support it. I will stay open minded, ultimately I just want to be as well as I can be. Lou x
Hi LouLou,
In Limboland too. I’ve only had two neuro appointments (both March) and am due to see a specialist neuro in May for another EMG. Something I found curious is that for the moment I’m not forecast for a scan. Apart from blood tests, I’ve only had nerve conduction tests, and that brought something up in terms of nerve deterioration.
So I wondered whether you’d been given EMGs also. I understand now that from an EMG you can tell whether its the myelin (nerve sheath) that’s failing or the axons (what’s inside the sheath). If I’m grasping it all correctly, with MS the demyelinisation means that the nerve conduction velocity is affected, because the loss of myelin means that signals are interfered with. Axonal degeneration, however, means that it is not the nerve speed that’s affected, but the strength of impulse. This is because even if some of the axons are still there working, they will work with the same speed.
The reason I mention it, is because if you have no signs in the brain/spine, but are showing such signs in your gait, then perhaps it might show up in an EMG of lower limbs? I think B12 can also affect lower limbs, without it necessarily being a CNS problem. I’m no expert, just someone who wants to understand things, so do take everything I say with a pinch of salt. I’m sure others will correct me if I’m wrong here.
Astro XX
5 years ago I had EMGs of my legs due to trapped nerve pain after a minor car accident, and that was what the results were put down to. I had a small prolapse and the pressure was coming from there. 2 years back I was having terrible buzzing and numbness in my hands and was sent to a hand specialist unit, as a result I had nerve conduction studies. Tests came back showing slowing of the nerves in both hands, I was diagnosed with carpal tunnel. I tried steorid injections bit that didn’t work so I had surgery on my right hand. The surgery failed and 8 weeks later I had a second surgery. 2 years on and I am still having problems with both hands. The NCS have been repeated and I still have slow responses in both hands. I wonder if all the pieces are linked but I just need someone who will put them together. Lou x