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Pernicious Anaemia Society
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Neurological involvement

Has anyone on the forum had a complete reversal from the neurological involvement or even part ????... And if so how long did it take??? And how did you realise that there was no more improvement???.. I know it's not a easy answer as everyone is different... I'm just looking for a bit of feedback on the subject... I've now had my 12th every other day injection... And have good and bad days.. And on the bad days I don't think I'm ever going to get well... Could it end up like that??? Good days, bad days for the rest of my life... It truly is scary... Thanks again everyone... All the best ☺

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I had problems with carpal tunnel - aggravated by water retention - for years - that hasn't completely gone but is certainly significantly improved.

After my loading shots my symptoms got a lot worse and I was having huge problems with severe pain in my feet and legs when walking. I also experienced, just before starting loading shots, a complete numbness in my left foot (which may in part have been related to an operation to pin the right ankle).

The feeling in my left foot started to come back and is now okay and it feels like a foot again rather than a lump of meat - this happened when I started to use methylcobalamin as a nasal spray.

The shooting pains in my feet and legs corrected when I started to get enough B12 to keep my levels where I needed them. My balance also dramatically improved at this point and I went from struggling to walk to being quite happy perching at the top of a ladder pruning a grape vine in the space of a couple of weeks using a nasal spray.

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Thanks for your reply ☺.... I tend to get a bit worse the day after my injection... All neurological symptoms... Poor concentration... Forgetfulness... Confusion... Twitching muscles in my legs... Pins and Needles... I understand it's early days.. It's just scary... I'm really glad you've had so much improvement... And I hope it continues for you.. All the best ☺

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Certainly the neurological problems I have had have improved once I got the b12 injections I so badly needed. The neurologist said he didn't think that the terrible pains in my legs and feet would improve - but they have, also my carpel tunnel symptoms have improved a lot.

In addition to the b12 I also massage magnesium into my feet and I am sure that helps. I don't know how, but it does seem to work. Has anyone else tried this?

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Thanks for your reply ☺ it means a lot.... I hope you continue to improve.....

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I was diagnosed in November last year, after decades of symptoms, so it's still quite early days in my recovery, I suppose.

Before jabs, I would have constant muscle twitches, mainly in my thighs, but also elsewhere. Also lots of intermittent numbness in various places. I couldn't feel half of my right foot or my left big toe. Then there were all of the spaced out, dizzy feelings and legs that felt, well, just not right.

The twitches were the first to start to improve, after a few weeks of jabs. My right foot is now 80% better and my left big toe doesn't feel as densely numb.

I still get the odd bad days, but they are getting further apart as time goes on. I just wish that the fatigue would do one, but it doesn't seem to want to at the moment.

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Hi Topazrat,

do you mind me asking what your treatment plan has been, your symptoms are soooo similar to mine and the twitches drive me nuts! :)

I've been in the US with only weekly injections but am moving to France where it seems like I can get b12 over the counter and ramp things up....

Thanks

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I self inject weekly.

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Hi Frances55. Your question's not an easy one to answer because everybody experiences different symtpoms and recovery for each individual takes place at a different rate...and it also depends on how long the deficiency existed before treatment started.

To make it even more complicated, once treatment has started some symptoms seem get worse before they start to get better, the theory being that it's a bit like new radio signals that blast out and then have to be re-tuned to normal as the body gets used to re-interpreting the new stronger (repairing and repaired) signals. Nobody really knows why this happens 😉.

Some systems also take longer to repair than others - neurological repair does take longer than other forms of system repair.

It's early days in your treatment so please don't despair and think that this is as good as it gets - it's far too soon to tell yet.

The most important thing is that you are able to continue on your alternate day injections since this gives the best chance for optimal repair.

In terms of no more improvement, it's a good idea to monitor your progress by keep a log of your symtpoms, graded on a scale of 1-10 so that you can assess what's happening on a week by week basis (sometimes small positive changes happen and go unnoticed when other 'larger' issues - like neurological repair- is taking place at a slower rate).

As long as you still any symtpoms at all, you should continue on the every other day injections - for up to two years (the maximum time when some say that no further repair will take place).

When you do reduce the frequency of injections, monitor your symtpoms to see if any return before your next injection is due. If symtpoms return before the next injection, this indicates that injections are needed more frequently. The aim is to adjust the frequency of injections so that you remain symptom free from one jab to the next.

After alternate day injections for neurological symptoms, the maintenance dose is eight weekly - but this is often not enough for many people. Some manage to negotiate more frequent injections with their GP (where the GP understands B12 deficency and it treatment) but this is not always possible - but that's perhaps a story for another day and you can ask about that if you need helps at a later stage.

Some people recover fully and manage well if they get the frequency of B12 injections needed to control their symptoms and keep them well. But it also has to be said that some people remain symptomatic at some level...it's not yet known why this happens...or what variables may make a difference to each individual's recovery (but I'm certainly not suggesting that you may be one of those people). Much more research is needed before this will be fully understood.

There was a post here a few months ago where one of our members reported that after a year of alternate day injections, her persistent pins and needles suddenly disappeared - and she was overjoyed. And another where after three months of intensive injections, the feeling returned to numb feet - and that person was able to start walking again.

I'm not suggesting that your recovery will be on this timescale - just wanted to let you know that recovery can and does take place after a long-period of treatment - albeit not as speedy as it can be for some.

So...yes...it's very very scary...especially because there are so many unknowns. As I said earlier, you've only just started your injections so it's very early days yet and there's no reason to think that you will not improve as time goes on. The fact that you are having some good days is really good news (though I expect it's not easy to think so when a bad days pop along and 'destroys' you all over again 😖).

Keep on with the alternate day injections...and come back for advice if you find that your doctor decides to stop the Inge so excited regime (we can help with advice and provide evidence to show your GP - who may not be aware that this is the wrong thing to do).

Good luck Frances55. Fingers crossed for more improvement PDQ...let us know how you get on...and post again if you have any more questions (there'll probably be lots) or just want to catch-up with other deficients 😀.

Take heart and take care 👍

P.s. Keep an eye on your folate levels as B12 and folate work together. If folate is deficient or low the body cannot utilise B12 properly. Your GP can periodically check your folate levels for you (if this hasn't already been done, ask your GP to do it sooner rather than later - processing large amounts of B12 uses a lot of folate 😉).

Also - people with absorption problems often suffer from other deficiencies too so if your GP hasn't already done so, ask for ferritin (a marker of iron deficiency anameia) and vitamin D levels to be checked. Either of these deficiencies can cause unpleasant side effects (exhaustion and pins and needles being two)... and the symptoms can be remarkably like those of vitamin B12 deficiency.

👍

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Thank you soooo much for your kind advice... I've already started a daily diary ☺.... I can't absorb.. So it's injections or sublingual.. I'm also a carrier 😔... Could you advise me on my injections.. I'm injection in my arm every other day, and if it's going to befor long period of time, wont the muscle in my arm become painful or damaged???... Can I inject another part of my body as well???... Cheers.. All the best ☺

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Hi Frances55.

It's quite rare for muscle damage to occur through frequent injections and when and if it does occur, it's usually assocIated with drugs that are quite toxic (unlike vitamin B12).

Injecting in the same precise location can (but rarely) cause a number of potential problems: fat build up under the skin, tissue damage (from not injecting deeply enough into the muscle), or the muscle can harden, bulge, or become inflamed ..though these are usually only problems if the same exact location is used each time.

I've never heard on anybody having problems with frequent injections of B12.

But yes...it would be a good idea to vary the injection sites.

I do IM injections into the thigh (outer / mid third of the thigh) - quite a large area that can be injected into. (Many images on the Internet - sorry, unable to insert images here and can't copy the links 😖). Also - videos on YouTube (or so I hear, haven't looked at any).

Some also do Subcutaneoue (SC) injections, which can be done into the abdomen, as an alternative (I stick to IM). Again, lots of images of the correct areas for injection on the Internet.

About sublingual - absorption rate from sublingual 1-3% - not recommended for those with neurological,symtpoms. (Sublinguals work for some people but not for others).

Absorption from injections 100%.

As you have neurological symtpoms and are able to self-inject - perhaps best to stick to injections (the recommended treatment). (Some who are not able to self-inject use sublinguals to top-up between GP injections when they are not able to get the frequency of injections they need - but not ideal where Neuro symtpoms are concerned.

Good luck 👍

P.s. I'm really impressed if you can manage to SI in your own arm - not an easy feat so you must be quote proficient. A thigh should be no problem 😂😂

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My symptoms were pretty mild - eye twitches and a weird feeling like hot water being poured over my foot. And I've not had either for a good couple of months :)

You can inject in to your thighs if your arms feel a bit sore - if you're doing it yourself, it's easier too!

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Thanks ☺... Yeah I still get a feeling of trickling water running down my legs.. I also had eye twitching.. But that's gone ☺... I spoke to the nurse today and she said the thigh... So I'll give that a go tomorrow 😔... Do you inject???.. How often??.. I wish you all the best for future recovery ☺....

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I inject maybe once every week or so. Fingers crossed, but I think I've hit the right combination of B12, folate and iron, and I'm feeling better than I have in ages :)

Wishing you well with your recovery x

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It took two years of injections every two weeks after weeks of every day injections before I felt like I was back. Don't be disheartened, for the positive changes especially cognitively are insidious. Just think how long it took for you to get those neurological symptoms, it takes time to recoup your losses. Yes, there are permanent neurological impairments such as peripheral neuropathy in my hands and feet, but so, so much better. Taking Alpha Lipoic Acid supplements 200-400mg range once a day helps my neuropathy symptoms -recommended by my neurologist. Pretty soon you'll be on the other side and look back to these yucky days with gratitude that you discovered the reason for your distress.

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My anxiety went away 5 days after my first B12 shot. My muscles however got worse. In fact I was just diagnosed with CIDP.

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I have had pins and needles in my hands and feet for a long time, before and after the diagnosis of B12 deficiency. This was always put down to a side effect of some hypertension medication. Since starting B12 injections 2 years ago I found the problem reduced then recently got worse and I would have to sit with my feet in hot water every evening for relief from 6 or 7 weeks into the period after an injection. Reading the various notes on this forum I told the doctor I was going onto a 2 weekly regime and explained why - he has read the information sheets from the forum now - and I have found the problem is now relieved by the injection, my toes no longer feel as if they are made of felt, no more sharp stabs of pain in feet and hands but these start to come back after 10 or 11 days, then retreat again of the next injection. This last Sunday was only the third 2 weekly injection so it is, as far as I am concerned, a success and I will continue with it. I have enough serum to do this another 5 times and a German friend is bringing me a pack of 10 in September so even if the doctor decides he cannot support me in this when we meet at the end of this month I will be continuing with the experiment for the next 7 months.

I can't say I am overjoyed at the prospect of a 2 weekly self injection but if the results continue as they have then so be it.

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Hi just a quick contribution to the discussion! One symptom I had was the complete loss of sensation from my bladder! I had no idea if I was bursting or not. This came on gradually over 2 months and was 24/7 last March. I started SI 2 months later (late April) and it took about 4 months of every other day jabs to get the sensation back consistently. So this was a ‘recent' neurological symptom and it took that long to repair. Just for comparison with longer standing damage. Keep positive - you will get there X

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Thanks for putting this up, I too have some incontinence and this gives me hope it can be reversed x

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HI have MRI of spine ..if it finds sub acute degeneration of spinal cord..its due to low b12,vitamin E or copper..Most of neurological problems will start with spine disc only which you can feel the worst symptoms here and their..Even doc will do 1 week injection but to heal it needs daily 1500MCG mycobalmin injections for 2 weeks then once a weak for 3 months with supplements daily and continue till 6 months for permanent solution...start taking trace minerals aswel...in no time nerves repair them selves else irrversal damage will be done due to docs not prescribing adequate...i was taking pills even after taking for 4 months although docs didn't told me my b12 recently just came to 350 from 180..i was thinking i might have crossed 700 or 800 ..dam this docs.

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Sounds like you've got through a war 😔... I hardly know much about my own symptoms... But yours seems complicated... I wish you all the very best for the future...someone told me not to get disheartened... So I'm passing that on to you... It helped me.. Keep pushing for what you know is your right ☺.....

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