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.
Thanks Sleepybunny, she seemedvpretty thorough. But she didn't test proprioception, although a chiropractor did earlier this year and it was pretty bad!
That's excellent news. Glad you got satisfying answers. 99% of my tests are ruling stuff OUT rather than putting a definitive answer to things. But at least i know what i don't have. 😂 which is a relief, but frustrating too. I had carpal tunnel. The surgery didn't help me, it turned out to be neuropathy. I'm not saying that is true to your case but maybe something to consider. Especially, if you have it in your feet too.
if you have neurological symptoms but already on b12 treatment for it, would there be any benefit to see a neurologist and get nerve conduction test done?
Im not sure I understand if there would be any value in going even after on treatment?
Well after my gp started loading doses he wanted to rule out other 'more serious' causes of the neurological symptoms I presented with - mainly MS I think - so he arranged the neurology referral. Pernicious anaemia not credible or serious enough for him...?! Personally I found it very interesting and encouraging to see that the ankle nerve reflex has reappeared from being non-existent 18 months ago, so it was worth it for that to be noted on my records. And I suppose the nerve conduction test can rule carpal tunnel syndrome in or out. We'll see!
Ah I see. I did multiple MRIs and blood tests to rule out other causes too but just thought i’d check if there is any value in still getting appointment with neurology
I think our gps send us in different diagnostic neuro/haemo/gastro directions depending on their knowledge - or bias - and our worst symptoms... it's often pot luck and reflects the non holistic viewpoint of our medical system. Shame there are no deficiency specialists! I'd say it's always worth taking any tests offered to gain as much information as possible. Just not a post injection B12 blood test of course!
Yes, I agree. If you are lucky enough to have a supportive GP who wants to ensure that there is nothing else wrong with you, given the difficulties surrounding PA diagnosis, it makes sense to eliminate other conditions by using symptoms.
My first elimination was bowel cancer on a two-week pathway. Neither of us thought this was the cause, but her computer was indicating the possibility. Later on, I saw haematologists, a neurologist, a dietician, gastroenterologists, Adult Inherited Oral Medicine consultants... and finally Oral Medicine consultants.
I have never missed or even altered an appointment, however long the wait or unlikely the route investigations have taken, because I always believed that, somewhere, there is a specialist or a test result that will explain the cause of my functional B12 deficiency and why I need frequent injections to control my symptoms the best way I can.
If you are not so lucky, and your GP is not supportive, the reason behind all the investigations can be a reluctance to accept that B12 deficiency can be this damaging to patients - in which case you could be eliminating yourself into a "hypochondriac" label !
I'd still take up the offer. Anyone can change their viewpoint regarding B12 deficiency. My Oral Medicine consultant had a complete change of heart about my self-injection regime. He now believes that my body needs this frequency and that tablets won't work for me. He checked with colleagues - out of concern for my "sky-high" B12 serum test result. This new advice was given to me in front of several of his students. We all benefitted from that session.
The Adult Inherited Oral Medicine consultants, who checked my DNA for reasons for continually raised MMA results did not find any cause. They apologised for being unable to help me, and recommended the Pernicious Anaemia Society as a supportive organisation. They were aware of the PAS research findings concerning what causes some people to need more B12 than others - and so they are also aware that there is much yet to learn.
Consultants need to see us as much as we need to see them.
I really like your comment that "consultants need to see us as much as we need to see them". That completely changed my viewpoint. I would just add, "as long as they are open minded and willing to learn from us and our symptoms"! Thank you for that, Cherylclaire x
So difficult for them to see us at our worst - it takes so long to get there, one consultant at a time, that by the time we do, we're mostly well into self-treatment !
By the way, the other option -keep on putting that "first injection" day off until you've seen them all or stopping injections so that they can see the true picture - now seems to me like deteriorating just to demonstrate that you will ! I wouldn't advocate that approach as it is dangerous. In that case, rather let them learn from books and research papers like we had to !
I once had an appointment due with a new Oral Medicine consultant, one who'd never seen me at my worst with angular cheilitis, and so I made the dopey mistake of stopping my twice-daily application of nipple cream in order to give him an idea... the appointment was cancelled ! Stupidly, I did it again for the next appointment - only to see the same consultant who had suggested the nipple cream use in the first place !
See how badly that can backfire on you ? You can actually see the result in a photo on one of my old posts. I think I called it "Don't make me laugh" !
Oh lord, we try our best but sometimes it backfires as you say. My injections were actually started 3 days after B12 blood test results, so I didn't have that dilemma. It did mean my first ever MMA test was done after having several injections, which I understand wouldn't have given the most accurate results.
You are right about the MMA, which should start to go down as soon as injections start, and should be in normal range by the time the loading injections are done, but MMA is rarely checked prior to injections.
Usually there is some difficulty in getting MMA tests from primary care. Most local hospitals are not equipped to perform the test plus I'd imagine costly.
Good that you have had the test, even after several injections. My MMA remained raised after my loading injections - I had a very determined GP and stubborn symptoms - and stayed raised for three years despite frequent injections for all that time. The 6th test was finally within range.
So not always a waste of time -and at least gives you an initial reading.
I would say yes do any and all tests they offer, so that you can develop a base line of damage so that future tests will have a prior reference to compare to. I have had 8 appointments in the past month. For all kinds of tests. Veins, nerves, lungs, heart, etc. They are narrowing things down and confirming diagnosis and ruling out other things. Without past tests, they would have nothing to compare to. I have had over 30 appointments in the last 6 months. I'm tired and frustrated but I'm finally getting answers that no one can dispute. Whether or not they can help me with them is another story. But, in my mind i feel validated for the first time in 45 years of trying to find answers. I say, do all the tests they offer you. Knowing what you don't have is just as important as what you do have. Just don't let them tell you it's fibromyalgia or sciatica. They can rule that stuff out but they also tend to use it as a catch-all. In my case what they considered sciatica was actually venous insufficiency. My veins are not pumping enough blood up and down my legs causing them to be very weak, fatigued and painful. As well as neuropathy and thick blood. It was never sciatica. All 3 of those things are currently going on simultaneously. They not only affect my legs but my lungs as well. So finally all my tests are starting to link to each other and make sense not just to me but to my doctors.
Tests are draining, but they eventually lead to answers. One thing I found when telling doctors symptoms, is that even if it doesn't seem to make sense you need to tell them about it. Nothing about PA makes sense.
My face swells very much in the morning and I had a couple of other symptoms that doctors were ignoring but when I finally told my rheumatologist and I "showed her pictures" of what I look like when I wake up, she was pretty shocked. The pics caused her to run further tests and that's when she found "thick" blood. Pictures are very important as well as keeping track of symptoms. No symptom is too small or insignificant
Wow EllaNore, full marks for persistence and it's good to see that things are finally coming together. I hope you get the treatment you need to feel better.
Thank you Myoldcat, you too. We have to believe in ourselves because doctors don't. And you have to believe that your symptoms are real and not in your head and you need to demand to be heard. They're not there to be your friends. Demand respect and demand to be heard
Yes Ellanore, like you I now know there are many things I don't have..! Interesting about your carpal tunnel/neuropathy situation. I can see physical changes in my wrists and palms so hope I get the nerve conduction test and any referrals soon, as I work with my hands and it's getting pretty painful and restricted. Oh the irony - I'm just getting my energy levels back so now I'm able to work more without dreadful fatigue, and now the hands are giving up! 🙄🙄🙄
I would let them do those tests. It could be arthritis. My hands were one of the first things that showed physical signs when PA finally stopped me in my tracks. The pain was incredible. I couldn't use them. They are much better now, but still painful and limiting. And they swell. It could be bloodflow in my case. On top of neuropathy and arthritis. But not carpal tunnel
I am taking an Essentrics exercise class, and our teacher does things that help out fingers, and wrist (and feet/ankles). Miranda Esmonde-White developed the program. She has worked with NHL ice hockey teams and Olympians. She has had a show on public television for many years. I like my in-person Essentrics class the best, but you can also get DVD's and I have many of those. Other programs that include Essentrics are called Aging Backwards. Glad to hear you are recovering! Very best wishes.
Nerve conduction studies (NCS) are effective for diagnosing issues with large nerve fibres, which control motor function and sensations like touch and vibration. However, NCS often miss problems with small nerve fibres, which transmit pain and temperature sensations. Therefore, NCS should primarily be used to assess large fibre nerve issues, and alternative tests, such as skin biopsies, are needed to diagnose small fibre neuropathy. Ask your neurologist about this.
Thanks B12 again, I will do this. I don't think I have neuropathy as such, but rather impaired sensation due to carpal tunnel nerve impingement. But good to be tested thoroughly if possible.
I asked Dr. Google if PA can cause CTS and this was the answer i got. Interesting:
Yes, pernicious anemia can cause symptoms similar to carpal tunnel syndrome (CTS):
Pernicious anemia
A condition caused by a lack of vitamin B12, which can lead to nervous system damage that causes tingling, numbness, or muscle weakness in the hands and feet.
Carpal tunnel syndrome
Symptoms include painful tingling, numbness in the hand and lower arm, and a pinched nerve in the wrist.
Other conditions that can cause similar symptoms include fibromyalgia and vasculitis. A general medical practitioner, rheumatologist, or neurologist can help with diagnosis.
Vitamin B12 deficiency is more common in people with severe CTS. Vitamin B12 is important for nerve health and can be replenished with injections.
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Vasculitis is something they think i have. I have Venus insufficiency and blood flow problems. I was just diagnosed with raynauds yesterday. And I think I have APS. All of those things affect my hands. But it was interesting to see that a lot of people with carpal tunnel syndrome have B12 deficiency.
Yes interesting, I spotted that connection. I also have Reynauds and had Dupuytrens contracture, so the poor old mitts are getting more than their fare share of problems 😕 Unfortunately as I am a self employed physical/massage therapist I sort of need them... My mum bequeathed me the PA and Raynauds, she didn't get on with medication for circulation but found ginseng was helpful in low doses. I find the fingerless gloves work well to keep hands warm around the house and you can still do things like use keyboards, phone, cook, etc. Hope you get the right support x
Oh man, a massage therapist yikes. That's gotta hurt. You could definitely have CTS from repetitive movement. I sure hope they can help you. Yes i love my fingerless gloves. As a photographer i use them all the time. And working at my computer, my hands go cold. The gloves are a big help! Good luck.
Also my Raynauds, doctor just prescribed nitroglycerin ointment for my toes and my fingers. It's supposed to open up the flow in the small veins of your fingers and toes. They give it to people under their tongue who have heart problems but this is supposed to be good for raynauds. I will pick it up today. Something to look into
Ooh that ointment sounds interesting - I always like something that doesn't have to go through the whole body. Keep me posted... Yes, 40 years of working with my hands intensively (although using safe techniques as much as possible) has taken its toll.
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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?
