Feels like I am walking on Bubble Wra... - Pernicious Anaemi...

Pernicious Anaemia Society
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Feels like I am walking on Bubble Wrap in both feet

tuscanboy
tuscanboy

I have had Pernicious Anemia now for 20 years and it started with my right foot as a little numbness but then it got worse and now I have it in both feet. I was doing 1 injection of 1000 mil. per month but now I do 2 per month. I don't understand why my feet keep getting worse even though I was doing my shots.

9 Replies
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Hi tuscanboy,

I went to the doctors because of my painful tingly feet and that's how I was diagnosed with PA!

I do remember my feet getting slightly worse after my initial injections, but getting better gradually after.

Hang in there I'm sure it'll get better in time :)

.........sorry meant to add...............

That's what doctors always tell us "it'll get better in time" But after 20 years I think you've had enough time?!

I would say at this point that you've some nerve damage from the PA.

Wishing you well

You could ask for either a neuro or a rheumatologist referral. One of my feet has never come right - in fact it gets worse. It's got to be permanent neuro damage. These injuries if they are left unrecognised, just develop into worsening conditions. You could try injecting more often and see if that helps but I 'try' and focus on foot care - it's a worry. If you could get a neuro to at least acknowledge neurological damage then they may be able to give you advice on how to minimise the problems?

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Hi tuscanboy ,

I developed problems with balance etc during the first 5 years of standard B12 treatment and decided to inject more frequently, also developed folate def, having increased my B12 and taking folic acid tabs has improved things for me, but somethings will never go. I did first see a haematologist and then a neurologist to exclude other issues and was then found to be folate def, so worth it. So perhaps first see a haematologist get blood test testing serum folate and ferritin, possibly thyroid function etc to see if either has gone to low and yes see a neurologist to make sure no other problems have cropped up. Then you can try more frequent B12 injections with possibly folic acid tabs if needed and a multi vitamin (as all B vitamins need each other to metabolise ), if you give loads of one vitamin but not enough of the others its just not going to work.

I hope this helps and you can avoid getting more neuro damage,

Kind regards,

Marre.

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Hi tuscanboy, I don't have any answers but I can sympathise. I've tried everything to get rid of foot pain for 8 years now. I honestly thought injecting B12 would have helped this, but it hasn't. What I have found though is the intense nerve pain and swelling I get gets worse just before my next injection, so maybe if nerves are going to heal it just takes a long time.

Have you been checked for diabetes?

I've just had to laugh. I contacted a neurologist regarding advice relating to remaining neuro damage after a b12 deficiency. The reply quite confidently said to get a referral to a neuro and have them check it out because they were quite able to deal with it.

I responded that I'd been there, done that, and that it was presumed all neuro damage was reversed once b12 levels were back into normal range.

I was told, You need a second opinion!

So you can clearly see that the guys at the top of their game realise that b12 deficiency can result in permanent neuro injury - what they don't realise is, the majority of the average clinicians, no matter whether they are GP or neurologist, are dismissing these injuries. Then the top guys think the damage is 'rare' because no one is reporting it!

So you've got people wandering around with nerve damage - like Helcaster, for 8 years - and nobody has yet confirmed what it is!

Just edited to add - I saw one doctor who 'threatened' to send me to a neurologist to 'prove' to me that b12 deficiency can't cause nerve damage.

My confidence level in the medical profession diminished to an all time low during that particular argument.

Hi

I saw a neurologist privately - waste of time - they said there were no neuro problems despite tingling in hands and feet, loss of finger tip sensitivity and a totally numb big toe. My tingling come back when B12 is low. I also have restless legs and have started myself on iron as the serrum ferritin has ranged from low of 11 to high of 33 in the range 10 to 300. I would think a level at least mid way would be normal. I have always been active and done a lot of physical work but now get breathless and a tight chest frequently. My GP just says it is all in normal range and refuses to test very frequently. My thyroid she says is normal although the TSH is creeping up slowly but still in normal range. It really is a DIY set up these days and slowly I am realising when I need more iron - like when the foul taste in my mouth comes back and my legs get worse.

I just wish you could get accurate figures so you know how and when to supplement.

Poppet11
Poppet11 in reply to gillsie

You might be one of those to benefit if you take the BMJ article in. Just ask her to put in on your records with a note saying your symptoms have never been acknowledged as relating to neuro damage.

They really don't get it, you know. They truly believe that they have remedied all injury once serum b12 levels are back into normal range. They need to understand the order of things and the limitations of that test.

It is DIY medicine. DIY medicine for a neurological illness. It'd be funny if it wasn't so life shattering.

Because they thought that the anaemia comes first and once the deficiency has been remedied (and the anaemia prevented) then neuro problems 'can't' exist. That's what's been happening.

If you look at it from their (ignorant) point of view, then we weren't making any sense.

The fact still remains, is that they have been assessing sick and injured people, and not acknowledging the fact. That's what I find unforgivable. B12 deficiency or not, we are walking into these consultations with neurological injuries. And they are, for the most part, sending us away.

I think Marre had a decent neuro, but they are so few and far between it's unreal.

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