4 months ago, i reported to my GP with 90% of the symptoms of PA. I had already done some online researching (as you do) and regardless of the diagnosis b12 supplementing seemed a good idea. So, I was taking some orally. I had blood tests done, which came back (conclusively apparently) to state that I don't have PA. So, I asked for a referral to a neurologist. The wait was 3 months. So I paid to go privately (at a pretty painful cost obviously). I had a brain and spine MRI scan booked (to investigate SACD or myeloneuropathy) The results came back 'normal'. The neurologist also ordered my GP to book blood (homocystene serum level) test AND Methylmalonic acid (urine) test. However, due to the chronic and variety of pain I have been in for this 3 months, I have been paying twice weekly for b12 shots at a 'beauty clinic' (I know). I have informed my GP of this on numerous occasions, but sometimes I swear they just ignore some of the things I say altogether. Anyway, my test results are due back soon I hope. It takes 4-6 weeks for the results of them by the way, as they are sent away. However, also upon reading some information about the urine test, I have read that for MMA, you should either do a 24hr urine test OR you should send off your 2nd sample of the day. NOT your first. No-one told me this. So, I donated my first. So I have a horrible feeling that with that, combined with my b12 IM supplementing, combined with the already low success rate of these tests, my results are going to come back like everything else. 'Normal' or indeed 'skewed-normal'
My Neurologist did recommend that they treat me with b12 shots empirically, prior to my scan, but my surgery had a 'multi-disciplinary' meeting about this and decided that being experts in this field, having X-ray vision, and psychically knowing that I actually, really wasn't suffering that I didn't need it.
However, since my scan results came back normal, and with me still complaining of what I can only describe as unbearable pain, he recommended they prescribe me Gabapentin. A painkiller. That I am supposed to increase the dose of regularly and seemingly exponentially, until I basically can't feel any pain, don't know my name and I guess, possibly end up insane.
Guess what? They prescribed this, no questions asked. Along with the Naproxen and Omeprazole that he tagged on for good measure.
So I'm now taking painkillers to numb the pain (which after 5 days have done nothing, I guess that means I need to double the dose though), strong anti-inflammatory's (to un-inflame parts of me that don't even know they're inflamed. Probably because they aren't) and Omeprazole (to protect my stomach from the unnecessary anti-inflammatories I'm taking). What a world we live in, eh? FYI, I'm not taking the Naproxen. As he prescribed that a couple of weeks ago, and they haven't done a thing either, although I have been told by my GP, that you need to take ALL the prescribed meds. Regularly. to build up the effects.
Ignore the fact that they are just masking the problem. And the fact that I've told them on numerous occasion's that I'm getting b12 shots 'privately' and they are the only thing that in any way has reduced the symptoms i'm suffering at all.
I've heard a lot of bad stories, AND seen a few 'whistleblower' TV programmes in the past few years, accusing doctors of being 'guided' to use drugs that don't so much cure issues, but simply reduce the symptoms or as is in my case just 'mask the pain' not directly treating the real underlying root of the problem, as it creates endless revenue for pharmaceutical companies. And it worries me, that I appear to be witnessing that very thing happening right before my very eyes.
I honestly feel like I'm behind a sheet of soundproof glass, shouting at them what I need and they are just ignoring me, like I'm not really there, and then just posting a prescription to me through a box like a late-night petrol station.
I wish I could make my GP suffer these pains just for ONE day, as I know they think i'm exaggerating.
Well I don't really know what the answer is now. I don't even know if I'm looking for responses to this post. I just felt the need to post somewhere, where I know people understand my pain.
I hope you are all having better luck than me, although we all know we're pretty much in the same boat. P.A. or no P.A. If you're suffering with the plethora of pains that come with b12 linked problem's I'm sure you've all been to hell and back. And back. And back again. Still, if you grab yourself a hot cup of tea and a Gabapentin, I'm sure you'll all feel a whole lot better. Good Luck.
Wow, they do drive you to a pretty extreme level of sarcasm in the end don't they?
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Dan10
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How are your VitD levels ? Need to be around 100 if you are in the UK. They are anti-inflammatory and a steroidal type pro-hormone - so much more than a vitamin 😊 Also more effective than the 'flu vaccine I have read.
Your VitD result at 78 is almost there - so a daily dose of D3 at 3000 IU's should crack it. There are important co-factors to take with VitD - Magnesium and VitK2-MK7.
Your TSH level of 1.07 - looks fine. TSH = Thyroid Stimulating Hormone from the Pituitary Gland. It is the measurement Docs use in the mistaken belief that it tells them if the thyroid is OK. Sadly it is only part of the story - and the other tests are FT4 and FT3 - also thyroid anti-bodies TPO & Tg - rarely done by the Labs when TSH is in range.
If your FT4 and FT3 are all low in range - then it could indicate Central Hypothyroidism rather than Primary when the TSH is raised and other results LOW. As thyroid hormones are needed in every cell of the body - trillions and trillions of them - and when the FT3 is low pain can be one of the many symptoms. It is for many.
Reading through your thread here I noticed gallstones - which again can point to Low thyroid - just a thought
In the absence of a clear diagnosis it may be worth ruling out just one more thing - Hashimotos - auto-immune thyroid.
Well, I guess my post was a bit more of a rant than anything. And obviously there was a level of exaggeration there.
I don't have a problem with the referral, or indeed the neurologist.
The problem that 'inspired' my rant, is that although I told my GP i have been supplementing with b12 prior to any tests, they have NEVER taken that into consideration. The fact that I've told my GP that i have been getting b12 shots, at effectively a less stringently regulated 'beauty clinic' privately, at a cost of £60-£70 a time. The fact that they are the ONLY thing that has in anyway relieved me of my symptoms. Which, I have listed some of below:
All ongoing for 4 months +
Numbness/tingling in hands and feet
muscle weakness
cramps
electric shock/shooting type pains
sore eyes
blurred vision
dizziness/light-headedness
days of just feeling generally very vague
chronic arthritic type pain in my hands (this pain is my worst symptom currently)
bad back pain, which I haven't pulled in 10 years, and now it seems to pull every other day with various activities.
Spasticity/very tight sore muscular pain in the arches of my feet/my knees/calves/and quads
severe episodes of headaches/sometimes localised, sometimes quite general (These appear to have subsided recently, but were very worrying at the time)
I've even noticed my bones/joints are cracking ALOT recently (heaven knows what that is )
All this, and when I tell them that the b12 shots, seem to help ALOT. Even to the point where I left it a day longer than i'd been used to, to get my shot, thinking, well, it won't make much of a difference, AND I thought it will be a good test to see if I actually require them so regularly anyway, I had the most restless night I'd had in as long as i could remember. Lots of cramps, and the next day the pain was terrible. I went and got my b12 shot and over the next couple of days, it barely eased. So I booked another, and only then a day or so later, did I feel much better.
So, my MAIN issue is, I've done the 'trial' tests myself and they work. Whatever the issue is, which I BELIEVE to be due in part, if not solely to inactive b12 issues, that they won't even so much as attempt to administer this treatment on a trial basis or any other.
I was told they wouldn't originally until they had an expert opinion. An expert expressed his opinion, and recommended that an empirical trial may be of some use, and then they just effectively 'voted' against it.
THAT is what has caused my rant. b12 works. I know it works. Yet they refuse to try it via the NHS channels and it is costing me a small fortune. Yet they are clearly agreeing that I have issues involving my Central Nervous System in some form, otherwise, why haven't they just refused to prescribe the painkillers etc. too?
Plus I have had to fight to get all this done, every step of the way, and it's physically and mentally draining.
Maybe I'm reading too much into, the 'conspiracy theory'. But regardless of this, the T.V. programmes weren't faked. My experience does reinforce certain theories. And there was a News item on TV the other day also, where a GP had resigned and was seeking a new career, as she didn't believe that patient care was at the forefront of their purpose anymore. They were consistently driven to meet both, time and cost targets.
I am in no way a conspiracy theorist, I'm just making my judgement on the evidence that is put before me.
I've for the most part had great treatment through the years from both my GP's AND the NHS in general, but on this occasion, I just don't feel supported or any level of understanding or empathy.
You have my sympathy Dan10 , it can be infuriating not being listened to in this way. Many people find it easier in the end to buy supplies and inject themselves. It doesn't cost much and you quite quickly get used to doing it.
I know I’ll get there eventually. I just expected more support from my GP’s. But I think I’m a ‘victim’ (I use that term loosely) of the current NHS culture. I even called my local CCG and although they didn’t give me a conclusive answer either, they did say that the GP’s aren’t obligated to take the Neurologists advice, which did less more than confuse me further. But, it seems they are working within their parameters. I think we may have gone beyond the era of common sense and reasoning of, if a treatment seems to be working then maybe continue with it, until the patient is better or stops improving.
I am probably going to end up self-injecting, my main concern is the lack of monitoring I can do with regards to the adequate levels. Added to my lack of professional medical knowledge.
Hopefully my test results will support my beliefs/requests. Although with having had the injections I feel they are going to be effectively sabotaged by my own self medicating, but I remain forever hopeful.
Once you start having injections, no matter who does them, there is little point in monitoring serum levels of B12. They are going to be high.
You monitor your levels by monitoring your symptoms. You keep the injection frequency at the level where your symptoms are reduced as much as possible.
I guess the best gauge is my body's own response and action.
I'm sure i'll end up self injecting, I just thought i'd wait for the test results to come back first. Plus, it would be good to know what the actual issue is. If it's not P.A. or SACD??
Dan10 - sorry you are having such a bad time of it.
The omeprazole was prescribed because of the naproxen ... though if you have low stomach acidity it probably isn't needed. My GP offered me omeprazole when I was prescribed naproxen to help with a trapped nerve about 4 months ago ... I refused on the grounds that I had low stomach acidity so it was unlikely to be relevant ... but the pharmacist issued a gastro-resistant variety instead ... The naproxen actually worked very well for that particular problem ... and in the course of taking it I realised that it works quite well for my migraines (my theory on that would be the muscle relaxing element as I get really bad gut spasms implying that muscle spasms are a key part of what goes on for me). I didn't use the full course but have been using them at times to deal with migraine but they take several hours to kick in because of being the gastro-resistant formula so my stomach (low acidity) really struggles to absorb them.
Hope that eventually you do manage to get through to your GP.
Yes, that is why it was prescribed. But even I had to point out to the Neurologist, that if my issue was due to b12 absorption then that would have an additional negative effect. he seemed surprised that I was aware of this, but said, "yes, you're right, but i'd still recommend it to protect your stomach. (it pays to do research, even if they do frown upon it at times)
I do need it by the way. I used to take Ranitidine, reasonably regularly as I had Gallstones, which my GP mistakenly for a few years diagnosed as Gastritis, so I was prescribed this. It didn't make me better and eventually when my gallstones were finally diagnosed, i had my gallbladder removed. After that, I have found myself turning to Omeprazole/ranitidine/rennie occasionally to keep my acidity levels in check. As, no longer having a bile reservoir, and now having a constant flow of bile into my stomach seems to make it quite an acidic environment.
..........and just to add to the problem, they put you on a proton pump inhibitor, the very med that BLOCKS intrinsic factor which is essential to the liberation of B12 in the gut, without it you can't absorb B12, I should bloody know, been on that stuff for 20 yrs and paying the price for it now; 7th day off it, a bit of rebound reflux that is dealt with by Rennies, and my symptoms are improving a bit each day although there is the '2 steps forward, 1 back' at the moment that I understand is part of the process.
But, that's a fine example of British healthcare, this guy is query P.A. so lets give him a drug that will bolster his downward spiral into the misery of B12 deficiency.
I can't use profanity here, but You all know what I would be saying lol
Yep. Well aware of that issue. See my reply to Gambit.
Thanks for the reply though. I have probably mimicked said profanity, on a regular basis since all this began. I hope everything improves with yourself. It's a long old journey by the sounds of things and I am only at the very beginning.
It certainly is mate and I feel like my life is over, I just can't man up enough to take the shots or even have someone do them for me; its a panic thing; once its in there, there's no going back etc
"...my surgery had a 'multi-disciplinary' meeting about this and decided that being experts in this field, having X-ray vision, and psychically knowing that I actually, really wasn't suffering that I didn't need it..."
Haha, thanks for this! Really made me laugh - although it's a serious point - I've had the same thoughts on many occasions.
"...I honestly feel like I'm behind a sheet of soundproof glass, shouting at them what I need and they are just ignoring me, like I'm not really there..." you're not alone in feeling that, either.
My experience was hellish and very upsetting.I have had great improvement through self injecting.I don't know why GPs are so pig headed when it comes to B12 issues.Its really worrying.Thank goodness we can treat ourselves.
Save yourself some cash and buy b12 from mycare.de and needles syringes bin and ampuole snapper online go to b12d.org and read it. Read the book COULD IT BE B12. I have been injecting daily since June get yourself ldn from dicksons Chemist. THE NHS WILL NOT DO THE RIGHT THING and treat the symptoms. They need to have test results and by the time you get positive results you have missed the boat.
Worryingly I feel like I may have already missed it
Thankyou for the information though. Seeing all these replies I'm beginning to consider going back to college and studying nursing or getting a doctorate, so I can open my own b12 administering surgery. Looks like business would be booming.
Hello Eaoz I haven't checked into this site for a while but your post caught my eye because you mentioned many conditions having overlapping symptoms. I absolutely agree, I have PA and Hashimoto's Disease amongst other things and now a Tarlov Cyst. All of these conditions I think can produce similar symptoms leaving not only me but probably medics treating me at a loss to identify root causes of symptoms, without further tests or examinations to differentiate. My experience is this is not done, I'm not even sure it's possible or if the NHS has resources to pursue this. I guess the policy is to treat symptoms with chosen medication and watch the outcome. I have always felt it would help if medics were more familiar with subtle symptoms of particular conditions but wonder if this is given as much attention in training in this day and age, when path lab tests are awarded such reliability, more often than not it seems, given more credence than patients reports . Point in case the unreliable B12 blood test, I'm sure many were undertreated because of this, depite reporting symptoms of B12 deficiency, I know I was. Before blood tests were available observational skills had to be excellent to identify disease, I think these skills are falling by the wayside somehow to the detriment of patient care. Wondering. if anyone else agrees with me.
I agree all NHS staff are under tremendous pressure from a government intent on destroying it and this does impact care standards but it is contrary to guidelines to rely purely on test results for treatment, in conditions such as PA but this seems the norm rather than the exception and I wonder whether this is due just to pressure of work or to a major change in the way Medics are trained, are test results now considered of more scientific value quicker and more reliable than skilled observations.
Hi Dan10. I read your posts with interest. When I got to your description of your symptoms, it was like a carbon copy of my own. I have no diagnosis and have seen several GPs, a neurologist, a haematologist and a rheumatologist. The haematologist put me on a trial of B12 (but standard frequency); neurologist prescribed pregabalin (still not taken it); rheumatologist told me I can up my OTC pain meds. Interestingly when I took some control and started self injecting at a frequency of twice a week I started to feel better and stop complaining to EVERYONE about my symptoms. Haematologist advised to stop SI at this higher frequency, which I did and now I feel awful again (with all the symptoms you describe).
The problem is trying to convince those, including my partner who does the injection for me, that I probably should continue higher frequency SI despite no test results supporting it (apart from my own self experiment and listening to my symptoms).
I feel your pain at what tends to be the NHS rollercoaster. As others have mentioned you could save yourself a few quid by buying ampules from Germany. Also to save a few more quid, you can get all the needles etc from needle exchange.
He did yes, which one of our experts on here contested. Basically his concern was lowering potassium levels drastically. I stopped the twice weekly SI back in October. At the end of that month I managed to get out for a run and started to feel normal again. Fast forward to today where I had to go to bed after just walking round the shops. I've decided to go back to SI. Will start off once every 2 weeks and see how my symptoms go then up or down titrate based on the symptoms.
It is a nightmare and I just feel sorry for my kids who I am constantly irritable with as a result of low energy, deafening tinnitus and weird ear symptoms. I was never like this 18 months ago.
Despite the lack of diagnosis, all the symptoms fit and the fact I started to feel normal again has to count for something.
Anyway, great to get the support on here from those who truly understand the struggle.
Ah, I see. Well it seems to me like this is one of, if not THE most complex systems of the human body. I guess if you have a natural imbalance, trying to rebalance it is a constant trial and error process.
It's beginning to feel to me, like your trying to spin a ball on the end of your finger, most of the time it'll be ok for a short while and then you have to keep adjusting. Some days you'll get lucky and the ball will be well balanced. Other days, it will feel like your trying to spin it, whilst hanging off the back of a speed boat. The conclusion being, our balance will always be out of kilter, all we can do is react to the most current situation.
I'm glad you're finding a way to manage your own situation, I hope in a few months time, to find myself in a better place too.
I hope your symptoms lessen, you can have a better time with your kids and everything settles down for you.
It is indeed some level of comfort to know you're not alone, and feel that other people out there do understand your pains and woe's. Heaven knows what people did before the internet. For all it's flaws, it has certainly made the world a much less lonely place at times like this.
Best of luck with your situation. I'll be sure to post an update, when I get to the SI stage, as no doubt I will have a million questions about that too.
I largely agree and I am not dismissing path lab tests as pointless in favour of observations, both are useful diagnostic tools. It is apparent though that in conditions such as PA and Hashimoto's under treatment occurs when test results alone are relied on, it is extremely frustrating to know you have symptoms that relate to your diagnosis but your GP basis his opinion purely on a blood test result , this has happened to me and a lot of other people judging by posts on support sites, it is contrary to guidelines, it is poor practice but it gets patients out of the surgery. As you said previously NHS staff work under pressure and situations that are not ideal arise as a result. Roll on the next election and hopefully a government that is not set on selling out the NHS.
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Too long a story to post all details, just need my question answered please.
Re testing all patients on b12 injections
I don't want to go down the rabbit hole again...
Have I got it all wrong!
