My GP has referred me yet again back to my Neurologist as she feels that Primary Care has nothing else to offer me! I'm a frequent visitor since 2002 with lots of symptoms. She is not willing to even try B12 injections as 'it is only for fatigue'! Actually one of my biggest problems is exhaustion never mind 'just fatigue'. I have tried with her but their minds are closed. I have also spoken to the in house pharmacist and mentioned the new guidelines. They really aren't up to date with things. Anyway I think he will take a look at PAS.
My question is, would the neurologist also be the one to maybe push re trying B12 injections as a lot of my symptoms are neurological? Other things have been ruled out over the last 16 years.
Think I'm afraid of being met with a blank stare and another refusal. Am I right in thinking it is quite a cheap treatment? So he can't use that excuse this time. If I were a GP I'd try anything to see the back of me and likewise I'd love to never go to my surgery ever again.
I am using sublingual spray now for about 6 weeks but same symptoms persist.
I'd quite happily buy my own supply if I could find someone to inject me initially. I've not much money
but I'd go without something else to do this. Despairing at the mo as my friends are all living a life and I am just getting by but my world is near diminished. Hope keeps me going.
Thank you for listening.
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Sallybones
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Sometimes i think we all have neuro problems- this b12d is all in our heads! Or so we are made to feel by gps and various consultants. Cant give you any guarantee about neuro advocating b12 seems from people here that like with the rest of the medical profession it is luck of the draw on who you get and how they treat.
Some symptoms persist - it can take quite a while before you notice true improvement and unfortunately for some that doesnt happen.
It seems to be a very fine art getting the right 'mix' for each individual. I find a b12 patch with other b' s added works well for me, but not for other people, i cant get on with the lozenges but some swear by them. It is potentially an expensive experiment to find which works best.
Injection paraphernalia and ampules of hydroxo are costing about £100 for 100 doses via amazon.
Lots of utube vids of people demonstating how they do it themselves- some are better than others but it would give you some idea.
The cost to the gp is actually the nurse time not the actual injection.
Ask the neurologist for a therapeutic dose of B12 injections. They can authorise your doctors to give you this. I am trying to get an earlier appointment with my neurologist to ask the same. Good luck
B12 is not only "only for fatigue" . Have you been tested for Pernicious Anaemia? The test Ian's fool-proof, and you can have P.A and test negative. I have P.A. And because my GP would only give me an injection every 3 months, I have to self inject. I use Methylcobalamin. You can get Methylcobalamin free of charge from the B12 deficiency society if you cannot afford it. Needles and syringes are really cheap from Amazon or Medicare. My neurological symptoms have more or less disappeared after 18 months of injections. Also the terrible fatigue. If you decide on this ,come back here for help. You can find videos on u tube to show you how to self inject painlessly. All the very best to you.
No I haven't been tested for PA and my GP doesn't want to go there. They go by B12 basic blood test which mine was just above the lower range limit, therefore 'normal'!! For such a basic functional need they really are not clued up. They are not really interested in mineral and vitamin levels either. She's palmed me off back to the neuro - may be worthwhile. Thank you for the other info too.
None of them seem to see the terrible fatigue as a huge problem. It's like 'so you're tired'!!
That basic blood test is unreliable . I was sent on my way because I was told I was within range. That turned out to be 150-- I had numb feet by this time. . You must go armed with all the latest information, There are loads of articles that you can print out . I can't give you the links , but others can. Trouble is when one is feeling so absolutely exhausted with brain "fog" etc, it is so very hard to summon the strength to fight these doctors who are so incredibly ignorant about B12 . All the very best to you.
thanks deniseinmilden. I will read the rest of your experiences on your profile tomorrow with great interest. Started with your first 3 posts. Very enlightening and makes me feel not so alone. So many years of suffering and being fobbed off wears you out when you are already worn out.
You definitely aren't alone! Your post probably rings a bell with most of us! It's really horrible, isn't it? Still, you are heading in the right direction at last and with the help of people here you should be better soon.
Has the GP done a test for B12? 10% of the population may exhibit neurological symptoms when their B12 levels are below 400 pg/ml according to diagnostic labs in the USA.
I've used a method twice now that may help get your GP engaged. Start a logbook and assess a severity score ( your own scale, say 1-5) for each symptom.
My GP initailly diagnosed anxiety and prescribed antidepressants. With the logbook I could show that not only did it not improve my symptoms but made them worse and other symptoms showed up that were also bad.
When you go the discuss treatment with your GP, type or write out the list of symptoms and date it. Hand it to them and invite them to include it in your file/record.
Somehow, having this "evidence" physically in their hand causes a change of heart.
I succeeded twice now, once in the UK and again in the USA in getting treatment and more frequent injections along with self injecting.
Use your GP and public health nurse as a resource. They can teach you to self inject.
Don't forget to discuss all your vitamin supplements with them also. Folic acid, vit B6 and a daily multivitamin are typical.
Have you tried contacting the Pernicious Anemia Society for their advice? I believe there is a phone number on their website for further help. If you are already supplementing, any further blood tests will not give a true picture. I'm currently getting six weekly injections from my GP, I had been on the three monthly ones but still had symptoms. It was only when I took a full symptom list ( and my husband) with me, that she sat and listened. The PA Society do produce an information leaflet for doctors, would your GP take notice of that? I do hope you can find more help. Best wishes MariLiz
Hya, yes I joined PAS and have spoken to Martyn, who was very helpful. Since I've been referred back to the neurologist I'm going to take a symptom list to him. Think I'll give a copy to my GP too then as it may make her re-think things and I may have to wait several weeks to see the neuro. Thank you for making me think about what to do.
Wishing you good luck with your fight for a diagnosis and treatment. It really shouldn't be this hard to get well. We are always made to feel we are troublemakers, or making a nuisance of ourselves. All we want is to be heard, and taken seriously. Best wishes MariLiz
i would contact the PAS and download their symptom checklist. I would take that checklist along to the neurologist. Ask him/her to test you for any central nervous system problems. Balance tests are quite easy to perform (stand with feet together and eyes closed, walk heel-to-toe with head up).
If you do display easily testable signs of central nervous system damage then your neurologist is more likely to believe that other neurological symptoms (depression, mood swings, brain fog) are caused by the same problem.
Explain your GP's reluctance to even consider B12 deficiency and ask for an initial course of injections and a test for anti-IF antibodies.
Iya, I know how you feel regarding the fatigue. Its awful and after sustaining a back injury in 2011 after tripping over, missing a step and falling directly onto my spine its taken from then until May 2015 to be provided with a proper diagnosis. My previous Gp kept fobbing me off telling me I had fibromyalgia. I knew it wasn't and a few of the Gp's at the old gp surgery then said to me to manage my own pain and one told me it was all in my head!. This was despite me being lent over their desk screaming with agonising pain unable to barely lift my legs to walk. I couldn't stand or sit. I have never experienced pain like it. We paid to see a variety of different consultants and even paid for a private MRi on my back because we knew something was wrong. The service I got from private consultations was just as lousy as my old GP's. Disgusting and you know when you've got a problem. Like you everyone was getting out and about and I was laid on the bed in agony for months. I managed to find decent GP who actually took me seriously. I was sent for an MRi and the scan revealed that I have coccydynia, spinal stenosis, lumber lordosis, disc degeneration, a pinched disc pressing on one of the nerves and spondulosis. Not much difference to the lousy diagnosis by my old Gp saying fibromyalgia. My life revolved around GP visits which is depressing. All you want is some proper answers. Unfortunately, in May 2014 my coccyx completely crunched snapped and pinged. Then came this horrendous burning prickly heat sensation and a really sharp stabbing pain in the whole of my lumber area into my ankle bones and to top it all the nerves were literally jumping and pulsing away. I went back to the GP and was given a blood test. The findings revealed that I had the B12 deficiency. I had the course on injections over a 2 week period and have to have a booster shot every 3 months. For months id been saying I didn't feel well but couldn't put my finger on it. My eyesight started to go, my hair was falling out each time I washed it and brushed it, my arms and legs started shaking, I had palpitations, horrendous fatigue and felt so run down it was unbelievable. After the 3rd injection of B12 I felt a huge difference. I was able to get up and down the stairs, my eyesight was a lot better, my stomach problems eased up, I felt so much more alert, my arms and legs stopped shaking. I thought wow this is fab because I can actually walk. It was like a new lease of life. I had no idea how serious the B12 was. What I didn't know was that once it starts attacking the pheripheral nervous system, it can cause permanent nerve damage. No medication like gabapentin will help once the nerves are completely damaged. If the B12 is left undetected and it starts attacking the pheripheral nevous system, that's it theres no going back because you can end up in a wheelchair.B12 deficiency can also mimic the signs of MS, fibromyalgia and spinal cord degeneration. I know someone who this happened to. A lot of GP's are just letting people through despite patients showing borderline B12 deficiency. Its not good enough because this is peoples lives. I really hope you get sorted soon. Theres nothing worse when you feel so ill and no one is helping you. Keep hounding your GP and demand some answers.
AAAAGHHHHH the dreaded Fibromyalgia word. Yes how many times have I had that thrown at me Smiler71. I also had an accident and fell down stairs middle of the night and landed firmly on bottom jarring base of my back. But I had years of 'all over pain' then numbness before that and it wasn't arthritis. Everything you have described is just me. I think I've already got permanent damage to my left side but you never know if I'm given the chance of trying injections. I'm certain there's an underlying problem and I've said that many times to my GP.
Thank you for your encouragement. I will fight on and take someone with me to my appointment.
Iya, don't give up and if your anything like me, by god was I determined to keep visiting the GP until I finally got some proper answers. I know people shouldn't have to keep trying to get through to these so called healthcare professionals but like you, I knew I had a problem and wasn't prepared to sit back and accept fibromyalgia, knowing full well it wasn't. You know your own body and you know when theres something wrong. People don't just suddenly experience horrific pain or lose their mobility for no reason. It used to drive me to despair trying to get through to these people that its not fibromyalgia. Like you, I hate that bloody word/diagnosis. A lot of GP's just fob patients off with fibromyalgia because that's the easy option and because they cant be bothered to investigate things properly. There seems to be an epidemic of fibromyalgia were I live. Seem to be more and more people being diagnosed with it. I had to be assessed by ATOS, and the guy I saw was really good. I purposely took all the different medication id been palmed off with and put it all on his desk. I took private reports to private consultants id paid to see and even the ATOS bloke lost his rag. He literally sat there and said, OMG, and then told me his brother was a top orthopaedic consultant in Sweden/Norway (round there somewhere, cant remember exactly) and his brother had said how come fibromyalgia exists in the UK but doesn't were he was based. Id been prescribed diclofenac, naproxen, indimitacen and tramadol. None of the medication even touched the pain. I said to ATOS that doesn't that tell people something when tramadol doesn't work. He said precisely and said its not good enough how people are being fobbed off. He thensaid to me, id got all these flaming reports but no one wanted to spend any money to release any funding. He said the whole things was winding him up and he wasn't the one in my position. We did laugh along the way within the appointment and I said to him if I didn't laugh id literally belt someone lol. I had no idea I was suffering with B12 deficiency. I also had no idea how serious the B1 was. Don't get me wrong, my back wont ever be one hundred per cent, but I can handle that. I think that not knowing whats wrong is the worst feeling ever. I'd said all along that whatever the outcome, id deal with it the best I could. I also have tibialis prosterior insufficiency (basically my arches have totally collapsed in both feet). Ive only been battling that since I was in my early 20's lol. It wasn't until 2013 that I finally got a proper diagnosis for that. What I didn't know was that due to my foot problem, that can also be a trigger for disc degeneration. I'm currently in the process of waiting for an orthopaedic apt. Its in May but wont hold my breath regarding anything getting done about it lol. The lousy Gp I had before I managed to get a GP to take me seriously had actually told me my foot problem was fibromyalgia as well lol. I even had to pay to see gynae because I was having huge problems. This new gp I now see got the ball rolling and said how the hell hadn't I been sent for a pelvic unltrasound scan before. I said basically because no one was interested. I said even the service id got from the private gynae consultant was dire. Turns out I have fibroids and the GP had ordered the pelvic scan also because fibroids can cause horrendous back pain as well. Least they've been really thorough thank god. The GP I see now was disgusted how ive had to pay for so much stuff desperate for some answers because my old GP had just basically told me it was all in my head, manage your own pain. Like I say, I'm just so pleased I was given an MRi on the NHS, the pelvi scan and the B12 was detected. Yeah, definitely re taking someone with you to the appointment to your GP. Eveb if the blood reveals borderline, sit there and demand the B12 injections because it could be B12 deficiency that you've got. My dad knows someone also who was off work for 4 months because she had suddenly began to feel really unwell. She was like me, unable to walk, sit stand and had a whole host of other symptoms. Her GP did the bloods and she had the B12 injections and within the space of a few weeks the lss was back at work again. She was running around, walking everywhere and she said what a difference since she had received the injections. regarding private fees, people shouldn't have to pay and tbh I didn't rate the private consultants all that much either. I found them to be only interested in getting their money. The only consultant that I can say actually helped me with a diagnosis for my feet was a top orthopaedic consultant/surgeon but when he transferred me onto the NHS it was a totally different scenario altogether. Basically they discharged me in 2014 despite myleft foot clicking/crunching in the same place its been playing me up since 2009. (my feet have always played me up but things have just got progressively worse). I actually said to the consultant, what the hell is that and he said he didn't know! He then tried to make excuses by saying was I sure it wasn't arthritis. I said no it wasn't because if he read my notes id had all tests for that. I said, we all know what the problem is but no one is prepared to help me. He then said they wernt going to offer me the operation but never did provide an explanations as to why they weren't going to surgically intervene. I still think it was due to funding. I was then told that if I had any more problems to get re-referred. No one wants surgery but somethings got to be done about it because in October last year, my left foot started crunching/clicking in the same place. I was living elsewhere with my ex partner and I cant fault the healthcare system over there. I got more info from MICATS than id received in years. He agreed to put me over to the orthopaedic surgeon to get the operation. I said due to the way im hobbling about its putting excessive strain on my feet and it was MICATS that told me Disc Degeneration was linked to my foot condition. No one else had bothered to explain things in all these years. Me and my ex have now parted (which im pleased about lol) so ive had to battle to get an orthopaedic apt over here because I'm no longer in the old catchment area. I had to be really firm though despite my GP getting to the root of my pain for my back and for detecting the B12. Dreading the orthopaedic apt over here because the hospital doesn't have the best reputation. Just a case of waiting to see whats said at the apt. I'm sure things will be fine. Christ i must sound like a right hypercondriac lol. Its just been one thing after another. Ive always said that no matter what nothings going to stop me from having a SOH because once you've lost that you've lost everything. I used to make light of the pain saying things like, i guess you cant run before you can walk. it was my way of coping because believe me the times i have actuall sat crying with the pain is anyones guess. I came across various people that used to say.. its mind over matter. This is people that are the type to complain if they have a cold or a mild headache lol. People that have never experienced agonising pain are clueless. I'd like to see them cope if their backs suddenly caused major mobility problems and they ahd to contend with chronic pain. They wouldn't survive/cope. Sorry for the marathon reply lol. I have a tendency to get carried away when I'm writing things down. I just thought if i could provide as much detailed info as i could, this could maybe help other people that are suffering with undetected B12 deficiency. I really hope you get through to your GP at your apt
I would definitely try getting your neurologist to look into a diagnosis of PA. That was the way I was diagnosed. My GP was adamant I was not B12 deficient as my levels were normal, even though 3 of my brothers and sisters were already on B12 injections for deficiency and my late father had PA. I was referred to a neurologist due to my having pins and needles in hands and feet, and numbness on the soles of my feet. That neurologist did some tests and was of the opinion that I was suffering from PA. He arranged an IF antibody test which came back with almost non existent IF and the PA diagnosis was confirmed. If it hadn't been for him I think I would still be fighting for a diagnosis because my GP surgery won't consider letting me have injections on a two monthly basis even though my pins and needles and numbness come back after only four or five weeks following my 3 monthly injection.
An IF test would at least show that your doctor is committed to finding a cause, however, a note of caution...the test is only 60% reliable and if it comes back negative it might be another stick to beat you with. When you go fir results you need to take a copy of the BCHS guidelines which recognise antibody negative pernicious anaemia. There are lots of causes of b12 deficiency where lack of absorption means you need injections for life. Good luck with getting the treatment you need.
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