Finally saw a neurologist after my gp referred me in February... only a 10 month wait!It was an interesting appointment- first some background history of my symptoms and duration, then she came at me with a tuning fork! Testing vibration on breastbone, fingers and toes. Then extremely extensive pinprick testing on bare skin and through clothes - "yes I CAN still feel it through my jumper" - and strength testing. Finally reflexes.
Now 18 months ago before my B12 deficiency was discovered, I attended a musculoskeletal assessment prior to an MRI scan for persistent lower back pain and the physio could find NO reflex in my left ankle. Since injecting I've had bouts of extreme and sometimes excruciating stabbing pain in my left shin and ankle which I've taken to be nerve healing (interesting to read the post and replies on pallesthesia from ClaireWF1346 this morning) And now that ankle reflex is back! Exciting!
I was worried the neurologist might query the frequency of B12 injections (I'm SI eod) but she didn't even ask what my treatment regime was, and I didn't say... so unless she makes a recommendation that wasnt discussed in the appointment I am hopeful my gp won't change my prescription.
She's referred me for a nerve conduction test as I have some weakness in my hands and what looks like the start of carpal tunnel syndrome.
So pretty positive all round, although it felt more about ruling OUT other causes rather than ruling IN pernicious anaemia.
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Myoldcat
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It sounds as if she did a thorough examination which is more than the neurologist I saw did. I like yourself was also sent for a nerve conduction test.
Our Gps refer us to neurologists yet they dont treat our neurological symptoms ! I also waited a year to be seen by a neurologist, a lot of damage can occur in a year hence why I started Sl eod.
It will be interesting to see what the nerve conduction shows.
Glad you're getting somewhere...ish! I had the nerve conduction test perhaps two years ago for a long-running issue with my wrist. I was diagnosed with carpal tunnel syndrome but I really don't think it is that - I didn't have any of those symptoms at the time yet I'd had wrist issues for over a decade.
Interestingly, I feel like when people mention their neurological symptoms are only on one side of their body, it's the left side. Wondering if there's a specific nerve on the left side of the human body that is most affected 🤔
I had a follow up appointment with the neurologist in September (saw her originally in January 2023) regarding my nerve pain in my left hip/groin and across my abdomen. She had originally sent me for MRI to check for nerve damage, which just showed I had wear and tear on my lower spine. I had a few nerve block injections last year but they didn’t work.
So in the follow up She basically said that yes, it was some sort of nerve pain and only thing that will really help is try more nerve block injections. So referred me to via NHS to the same chap I had seen privately. Got referral letter and range to check wait times - 12 months!
But I do feel the pain is a lot better, still there sometimes, but not as bad. So perhaps it was all B12 deficiency. Or maybe it’s because I’ve felt so tired recently up I haven’t done as much so it’s healing.
But interesting about the left side being the main area. As I feel nerve pain in my left shoulder/arm too. 🤔
That's very interesting - I first went to the GP in 2015/2016 with fatigue, daily diarrhoea- and left hip/groin/abdominal pain and lower back pain. All of which, combined, put me on a 2-wk pathway - no, it wasn't bowel cancer. Physio treated it as bursitis although nothing showed up on ultrasound scans, x-rays, MRI showed (like you) wear and tear arthritis. No treatment beyond the standard 6 physio sessions.
Over time all this improved - I think due to frequent B12 injections for functional B12 deficiency. It was fine when walking (good for my osteoporosis of the spine) - but could not stand still for long without legs shaking and very uncomfortable leaning forward, lying on my side or turning over.
Recently, some of my old symptoms have returned. After 8 years. I have been more busy, more stressed, less sleep ..... could be to do with this.
Most noticeably, and dishearteningly, the return of left hip/groin/abdominal and lower back pain - so I went back to the GP practice. Have again been given physio - got the same exercise sheet to do. Physio now does not want to see me again, understandably, until I've had the scan done: ultrasound soft tissue. This is due next weekend.
Wow, I could have written this! I saw gastroenterologists, colorectal consultant, physios, an orthopaedic consultant who said I had some bursitis and gave me an injection which didn’t help. None of them could pinpoint the problem, most of them just fobbed me off with try a FODMAP diet, just neuropathic pain, do this exercise or that stretch! I also had ultrasound to check for hernia, but not that either.
I still have some discomfort when I lie on my left side for too long. But I do find walking doesn’t affect it now, which it used to. I did used to find that swimming aggravated it a bit, but I haven’t been swimming for a while, so not sure if that has helped.
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GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?
seeing neurologist, advice on b12 injections welcomed…
Seeing a biochemist to discuss maximising PA treatment...any ideas for questions?
