I'm wondering whether people who suffer from paresthesia as part of their symptoms find it improves with rest, or gets worse if they do not rest?
Numbness and tingling in my fingers are one of the main symptoms for me and as I'm an electrician they can be a real pain (pun intended) when trying to grip screwdrivers etc.
I've not seen any guidance on whether regular repetitive movements (like using a screwdriver, or indeed typing) make any difference to the symptoms?
Is there any way that continuing despite them could make things worse, given that they are a symptom, unlike Carpal tunnel, where these movements are the cause
Before my B12 test I was getting to the stage of considering a change of career because I was finding it hard to hold a screwdriver - I'm hopeful the treatment will help that, but also wondering if I may be making things worse and may need to consider long term career options.
Gavin
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GavinUK
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Hi Gavin. Your question's not an easy one to answer because everybody experiences their symtpoms differently. Some say that the parasthesia is there all the time (mine currently is) but some say it seems to be more prominent when an injection is due.
In my case, regular repetitive movements or resting makes no difference at all - the parasthesia is just there.
I note that in one of your previous post you say that:
She [the GP] was rushed and didn't seem to recognise the distinction between neurological and non neurological symptoms in terms of time to the next dose (stated that the standard is 12 weeks) but was willing to be flexible if symptoms reoccur sooner.
This is a little worrying - being flexible if symptoms reoccur sooner is not good enough (sorry to say) - especially since your symptoms are ever present - which they are.
The best way to combat the parasthesia (and other symtpoms that may still be present) is to have the correct neurological regime of injections right from the start. This gives the best chance of as much recovery as possible, and delaying this treatment may have a detrimental impact in terms of potential irreversible damage and eventual recovery.
If your GP wants prescribing information about this she can find it in the British National Formulary - the BNF - (she'll have a copy). It's the second item down so she may have to read further than GP's usually do.
Note: this refers to the treatment of PA but whether you have PA or not is a moot point: the treatment for PA is the treatment for the B12 deficency it causes...so the treatment for B12 deficency is the same, whether caused by PA or not - B12 injections.
Think if I was you I press for the every other day injections - only way to try and combat the parasthesia (oral tablets, sublinguals etc. are not the recommended treatment when neurological symptoms are present).
About long term career plans - probably a bit too soon to start thinking of making permenant changes (unless you want to 😉) because it's very early days in your treatment and there's no telling how you will be in a couple of months time. You won't be making the actual symtpoms worse by continuing to work (and hold screw drivers etc.)...it's more a question of can you sustain the energy to work...and can you work safely. And again, you may feel very different in several weeks or months time. It's just very difficult because there's no way of knowing how fast your recovery will take...and to what extent this will happen.
Just want to pick up on something else in on of your previous posts...it was mentioned that your GP would test your serum B12 levels (I think you said in three months) and see what they're like...well...
Once injections have commenced, all the guidelines state that testing B12 levels is not required (unless looking for low levels)...following injections, levels will (should be) high - or very high (because you've been injected full of B12 😀). The high levels have no correlation to the efficacy of treatment and B12 injections should never be stopped or given less frequently because of high serum B12 levels. (I.e. Every other day injections should not be changed to eight weekly injections if symptoms are still present - even if B12 levels are off the top of the scale ((mine are always over 2000ng/L)).
Think it's been mentioned before but have your folate levels been checked? B12 and folate work together so if folate levels are deficienct or trotting along the bottom of the reference range, the body cannot process B12 properly.
So...it's late now...and I'm out of time, so have to trot off...I know you've been reading but haven't time to look back right now and see what information you've already been given...so...
Going to paste in some links to information in case there's anything in there that you haven't seen before (BCSH Cobalamin Deficency treatment guidelines have a diagnostic flowchart for the diagnosis of antibody negative PA might be worth looking at) also - couple of things about serum B12 testing following treatment)....and lots more - that you may or may not have seen...all annotated as to contents so you'll soon spot anything that may be relevant.
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
Good luck...go for the neurological regime...and post again to let us know how it goes 👍
P.s. Your GP is not alone in not knowing about the neurological regime of injections. Many GP's don't. Most are oblivious to the neurological havoc that untreated or undertreated B12 deficiency can wreak on the body. Ask her to look up subacute combined degeneration of the spinal cord (details on the PAS website if you're a member, or elsewhere on the Internet). She should have no trouble prescribing every other day injections, if she reads that 😀.
A further thought - you could offer to be taught to self-inject if it would save time and resources for the surgery (no every other day visits - probably better for you, as well 😀).
Foggy - Many thanks for that reply. There is some very useful info there, which I will digest when I get the time to fully take it in.
My folate level was 6.79 mcg/L (range 3-20) so not at the very low end. My vitamin D was low so I have tablets for that.
I am starting the loading dose of alternate days on Friday, but only for 6 injections. I have my IF test on Monday, so I've been waiting for that to happen and then I was planning to write a letter laying out my concerns and including the guidelines and references as needed. Knowing whether the test shows positive for antibodies (I'm aware of the low sensitivity of it) may alter my approach, although not in terms of the outcome I seek.
(I'm not completely sure yet that coeliac disease can yet be ruled out as a cause - though again that shouldn't change the treatment for the B12 issue)
To be fair to the GP, I think she was suggesting that the blood test might be a way of seeing if the levels were low and injections needed more often. I'm not clear if the levels have always fallen to 'low' levels again in those who have early symptoms though, so it may not be as useful as she was thinking. I have seen a recommendation in one of the references for an initial test after the loading dose (after 3 months) to see if the levels have fallen again - presumably to get some idea of the individual fall off - though not to decide whether to continue the dose or not.
It's unfortunate that the Neurologist who wrote to my GP asking her to start me on the right doses didn't specify what they should have been, as she should be more aware of the difference (though from what I've reading that's not always the case either!)
If I need to I may go back to the neurologist to see if she can specify the dosage. I have 6 doses booked in at least (and the ampoules already in the fridge) so I have a little time to work with and perhaps see how my symptoms improve.
I will consider the self injecting if need be, though I'm not overly keen on it - especially since my handling can be a bit clumsy at the moment because of the numbness!
I could always be lucky and find that the 6 doses are more than enough to improve my symptoms of course, but I guess only time will tell.
Your Folate level is not that high given that it will be needed when you start your B12 injections.
I'm not a medically trained person but think you would be wise to ask your doctor about supplementing with folic acid once your injections have started.
I was told that I would have to "give up" my electrical apprenticeship (at the age of 17) back in 1959 following gastric surgery for the removal of two thirds of my stomach but being a "callow youth" I chose not to take the surgeon's advice and went on to qualify,
No explanation was given as to why I would need to find a "sedentary job" - whatever that meant....
By 1962/3 I was beginning to realise that my energy levels were declining so I got a job as storeman/buyer for an electrical wholesaler which was far less strenuous. Long story short, I lost that job through "ill health" was off work for three years, retrained in accountancy (by the Government) and registered as disabled in 1970.
(My disability registration was not for the then unknown Pernicious Anaemia but because I was unable to continue employment as an electrician for which I had been trained due to the gastric surgery).
However my health still declined in my new "sedentary" job until - at last - after two "Schilling's" tests, one in 1968 which was "inconclusive" and the other in 1972 I was finally diagnosed with P.A. by which time I was a "walking Zombie".
More than 45 years on I'm still "clivealive" and over 75
Hi Gavin. B12 deficiency is such a tease, isn't it! And it's not always very easy to define the cause either. It does sound as if your GP is going to be supportive, so that's good news 😀.
And you're right, three main things to consider:
B12 injections should not be stopped if your B12 levels are off the top of the scale - it's just a result of the influx of B12 from the injections. High levels do not equate to repair or symptom control, or a return to good health. Sounds like your GP knows to treat the symptoms, not the serum B12 results, so that's good news 😀.
Testing after B12 injections is only recommended if looking for low levels - in which case more frequent B12 is needed (some people hyper-metabolise B12 so levels can drop really quickly).
The extent of your neuropathy means that you really should be on every other day injections....until no further improvement. Neurological repair takes quite a bit longer than repair to other systems that use B12 and while it would be good to think that six loading doses would 'do the trick', it's more likely to take a lot longer than that (but oh how I do hope you can prove me wrong).
Also - you might find some brief respite after 'the six', then find that symptoms return very quickly - certainly long before the usual three month wait for the next jab (or eight if on the neurological maintenance regime).
Sounds like you're becoming really knowledgable about all things B12 - so excuse me and just ignore what I've said if it's already sloshing around in your head 😀😀
Anyway, good luck Gavin...hope you're soon back to full screw driver management...let us know how it goes.
Well, I had the first loading injection today and am not entirely cured yet
The nurse was actually quite good in explaining what to expect so that helped me gain a little more confidence in the practice. I raised the guidelines with her and she suggested I go back to the neurologist for guidance for her (since my GP is now away for 3 weeks), so a letter went in by email today and hopefully she'll respond with something positive. The next 5 doses are booked in anyway.
Only effects I can note from the injection so far was a slight 'heat' in some of the fingers of my left hand - and an itching that's started this evening...but that may be the loft insulation I was touching on a job earlier!
Doesn't seem to be soon either, since I drove all the way to the surgery and parked before realising I'd forgotten to take the B12 with me! Bit daft of the surgery to expect people with a condition that can cause forgetfulness to remember their dose each time really....
I didn't get any advice from the nurse on other maintenance doses, but since I have some I plan to take some daily folic acid 400mcg, given the advice by clivealive and others, at least for the period of the loading doses. Presumably that level daily is unlikely to push me up over the upper limit in such a short time?
I'm also on Vitamin D for 3 months, and trying some Betaine HCL to assist with digestion, as well as a pro biotic so I'm starting to rattle
I am finding that apple cider vinegar (and now betaine HCL tablets) do seem to be assisting my digestion/ibs-like symptoms, so it's looking increasingly likely that I have low stomach acid, which may have an input on my eventual full diagnosis. (still waiting for my IF antibody test to come back)
However, it's a positive start at least, so hopefully things will continue to improve, or at the absolute worst, not get any worse...
Since I read the average diagnosis of B12d/PA is 60 I guess I should count myself lucky (I'm 46) that I may have caught it earlier than a lot of people and won't have to suffer as much as some on this board clearly have.
Hi Gavin. Great the hear that you've started your loading doses...warm and tingly is good (not withstanding the loft insulation 😖)...let there be sensation where hence there was none 😀).
Don't be surprised if you manage to feel worse before you feel better - some do report that - it's thought to be to do with cells 'waking-up' and starting to repair...a bit like blasting new signals through an electrical channel - which then takes time to re-calibrate and settle down to re-interpreting the new signals (but nobody really knows why).
Do follow-up on the intensive neurological regime - you definitely need it. (If you have trouble getting it and you need more evidence to share with your GP, I have some links to,information that might be useful - though I expect you have them already 😀😀.
I had a good chuckle about you turning up at the surgery without your B12 ampoules...the good news is that at least you remembered to go to the surgery for...hmm...something 🤔😉.
About the folic acid...400mcg won't be enough to push you over the top...so not a bad idea, especially while on the loading doses and if you start the intensive regime (a good idea to ask your GP to check folate levels periodically so you can get to know how much your body actually needs).
Too much folic acid can be bad for,you and cause some quote unpleasant side-effects...and not everybody needs to take additional supplements. Here's a link to more information:
Take care with the Betaine HCL - contraindicated if you have active gastritis (as opposed to gastric atrophy) - a bit like pouring acid on an open wound...ouch ouch.
And yes...improvement...some things are slower to heal than others...like neurological symptoms...so don't lose hope if things don't improve as quickly as you'd like (as in immediately 😀). There was a post several months ago where someone reported that neurological symptoms had suddenly disappeared after a year of every other day injections...but I'm certainly not suggesting that it will take so long for you...🙄.
Also want to say that it's so good to see you in the forum trying to help others...and my goodness, there are so many people to help...sadly.
Anyway Gavin, keeping everything crossed for you...let us know how you get on and take care.
👍
P.s. Spotted your newer post...nothing to add to that, other than its not always possible to diagnose the precise reason for B12 deficency. Especially since most GP's have never heard of antibody negative PA. Though wouldn't it be great if it was.
The main thing is that you continue to get your B12 injections 😀😀
Thanks for the advice and support - I'm glad this forum exists so more than happy to give back where I can (while recognising my inexperience compared to some).
Unfortunately (as detailed in my other recent post), it doesn't look like I will be able to get a longer loading dose, at least not based on my neurologist's response - although I will raise the issue with my GP again once I see how my symptoms fare after 6 doses (so far had 3rd today and some more slight tingling, but no change to the lethargy, and perhaps an increased shortness of breath).
I will continue to learn and hopefully find a solution that works for me.
Hi Gavin. Oh its so frustrating...why on earth can't GP's and consultants simply follow the guidelines...and give you - and everybody else who needs it - the right treatment. Sometime, words just fail.
If talking to your GP doesn't work, you could try putting in a formal written appeal for the correct treatment, including evidence and guidelines.
Some have had success doing this since a letter would go on your medical records - together with the guidelines/evidence - so your GP would find this quite difficult to ignore - or ignore at his peril. And yours too!
You could also include information about subacute combined degeneration of the spinal cord (a potentially irreversible neurological condition the occurs due to the under treatment of B12 deficiency) - and ask him to confirm in writing that you are not being exposed to this due to the failure to follow the BCSH guidelines for the treatment of B12 deficiency with neurological symptoms. Might sharpen his thinking a little.
Hi. I had awful pins and needles, leading to complete lnumbness in my hands, on a daily basis. It seemed pretty much irrespective of what I was doing with them, though it was very obvious if I was trying to sew, knit, drive… When I started to self-inject on alternate days, I reckon it was 2-3 months before my hands were normal.
However, I also have carpal tunnel syndrome - which I first had probably 20 years ago. This reoccurred a few months ago (increased pins and needles, lots of aching in my hands and wrists, twinges) and I have since had surgery (right) and it is lovely having a hand free of issues! It may be worth checking that this is not also part of your problems too. Good luck!
Glad you have some improvement sirlam! I started by seeing an orthopaedic surgeon for cubital tunnel and they ruled that out - at least to the extent they can operate.
I had that and the injections did help. Its not frequent enough for me so I take sublingual daily and a folic acid top up. The tiredness in particular improved. Good Luck x
I think you will find the parathesia will come and go. Mine is worse when an injection is due, sometimes it's worse at night when I'm resting. I also find the numbness in my feet is worse when I've been sitting down for a time. So to keep moving and using your hands would seem to be the right approach. Give it time for the injections to work, it isn't an instant cure.
I had same problem been a landscaper for 30 years and docs said it was arthritic.Which I disagreed finally after a year of mis diagnosis said I had PA 3 monthly injections after loading doses. Tool me a year and lots of moaning get it down to 8 weeks also SI every other month to bring symptoms under control. Gona do every 3 wekks cost me about £15 pound with my supply and docs.
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