Extreme leg pain is it pernicious anemia or something else???

[CrazyCatLady39]

My health has gone down hill in the last few months. I've had pernicious anemia since my early 20s and I'm now nearly 40. I've been getting B12 injections every 2 months. During lock down I wasn't able to get my B12 injection like normal. I became unwell with extreme fatigue and the worst pain I've ever had in my legs. I started getting leg twitches at night. The pain get so bad I just couldn't stand it so I called my health centre and pretty much begged for a phone call appointment with a doctor. I got my appointment that afternoon and then within 20 minutes I got my B12 injection. I began to feel a lot better within an hour. Unfortunately the pain in my legs hasn't completely gone. It has gotten worse again in the last few weeks. I'm not due an injection. I had another phone appointment with a doctor, a different doctor, who thinks the pain is nothing to do with my Pernicious Anemia. I'm booked in for blood tests. Has anyone else had anything else like this? I'm just so worried

[Hidden]

I have p.a and ive had referred leg pain from my back for years,left leg has always been worst right down the outside of leg down to foot.I had a back injury which caused soft tissue damage and I saw a neurologist at John Radcliffe who did nerve conduction tests in that one leg and said I’d minimal nerve damage in it.

I now question was it the p.a that caused the nerve damage or was it the back injury.I had back issues long before the back injury.

It’s good that your gp is arranging blood tests and if you have any neuro symptoms at all make sure you report and try and get a referral to a neurologist best of luck and don’t worry your doing all the right things x

[CrazyCatLady39 in reply to Hidden]

Thank you. I'm trying not to worry. I guess I should wait and see what comes from the blood tests and take it from there

[Hidden]

I’ve got P.A. and I have leg pain on and off, it’s been pretty bad this week. It’s good they’re looking into it! I keep a diary of symptoms so I can remember and check how often various things happen and hopefully spot patterns

[CrazyCatLady39 in reply to Hidden]

Keeping a symptom diary has been mentioned to me before I really should do that. Thank you

[Hidden in reply to CrazyCatLady39]

I also use Symple app which is fairly basic but lets you record up to 5 symptoms and factors (meds you’re in etc). I’ve found it useful for recording how my pain and brain fog are at each stage of the day because it has sections for night, morning, afternoon and evening x

[Nackapan]

It's best to get everything checked out .

In my daughters cases when her injection is due she has alot more pain in her hips back and legs.

I also do to a lesser degree as my head gives the worst problems. I think once tiy have missed an injection the 'catch up time 'causes more symptoms.

Hope it settles soon and nothing elses found.

[waveylines]

As you had a longer gap between injections you may need a booster course of b12 injections like you had when first started. The surgery could do this whilst you're waiting to be checked out.

[Cherylclaire Forum Support in reply to waveylines]

Yes absolutely - a reloading dose first to repair damage done.

You know what it is like when you put it off a bit - you only feel the benefit a few injections down the line. You say "never doing that again" -but then you get tempted to reduce again. Why that is, I'm not sure.

Of course, there is some motivation to look for a "something else". Otherwise they are admitting that the decision to just stop patients' B12 injections can have a detrimental effect on their health.

Let's say it did turn out to be "something else" - the additional B12 injections given in the meantime would be harmless anyway.

It is wise to have checks- one person's experience being unlike anyone else's. This is what makes it so difficult to get anywhere. Must also be very frustrating for those GPs and consultants genuinely wanting to help with diagnoses and effective treatment on an individual basis.

I still have difficulty understanding the thinking behind a complete block on B12 injections by any practice. Do they not see us at all ?

CrazyCatLady39 - hope you will be given reloading injections, and hope this will get you back on track.

The blood tests can't hurt and will put your mind at rest in any case. They should not need to test your B12 levels, since they must be aware that PA is still not a curable condition.

[Vps1980]

I get extreme leg and arm pain, I also get full body burning it’s horrible xx

[Jengastar]

Yes I had leg pain - felt like both joint and muscles and was worst in morning. Completely gone since I started daily self injections. I’m same age as you too. Hope improves with your injection and good luck.

[Happysmile]

I got strong pain in one place in one leg when I started loading doses. The doctors could never work out what it was. I now only get it when I’ve not had an injection when they are due. For me, as well as brain fog, it’s the first sign I need an injection. Ironically it’s quite a useful reminder now. I hope you work out what’s causing yours as it was very worrying for me until I realised it was connected to my B12 levels.

[Aaryan_93]

You just described me,I was diagnosed with levels of 182 pg/ml three months back and though the current levels are pretty good (476),I still can't walk properly. It had started with low back pain radiating to right leg and extreme fatigue and after multiple visits to doctors I was given methylcobalmin orally 1000 mcg daily and now I have been getting twitches in legs and arms mostly at night and leg pain behind the knee to be specific and when I try to walk the soreness and pain aggravates but I don't feel the pain like when I am resting or trying to press on my legs with hands ,it's just when there an activity that involves walking normally.In the morning when I wake up I also feel kind of dull ache in legs. Guess these are not classical symptoms but some people do get them like you and me. I even had nausea and morning vomits while the endoscopy was normal. You are right that these twitches are scary and made me quite anxious but also they bother less if I don't hyperventilate or worry much.I am also getting my potassium and magnesium test results today to rule out the deficiency as these mineral deficiency also cause twitches and muscle weakness.

Hope you get better soon.

[CrazyCatLady39]

Turns out I'm deficient in magnesium and iron. I'm on pills for both. Leg pain has gone now. Doctor says it's my diet to blame for this but my diet is healthy with plenty fruit and vegetables and red meat. He couldn't explain it after I told him that. I asked if it was linked to my pernicious anemia and he has no idea