Leg problems

[expatkerry]

Can anyone tell me if they have leg problems with their PA? Mine are painful one day then not so bad the next. It feels like my knees are not connected properly. I'm being treated by my gastroenteroligist who seems at a loss to explain the symptom. I belueve I am still deficient with my B12 at 340 but my specialist gets tetchy if I try to discuss it. I'm thinking of asking for a referal to a haemotologist

[clivealive Forum Support]

Hi expatkerry

Any doctor worth his salt will know that the serum b12 test (if that is from where you quote the figure of 340 is from) is skewed if you are having injections.

I am not a medically qualified person but as one who's had P.A. for 45 years I have trouble with "burning"/pins & needles in my feet and legs and numb thighs and often it seems like my brain doesn't know where my feet are causing me balance problems.

As these have increased over recent years I have (at last) negotiated with my doctor to increase the frequency of my injections of cyanocobalamin from four weeks to three weeks and my level was .VITAMIN B12 (SZ1706)Normal no action469pg/ml187.00 – 883.00pg/ml

The pains you describe could well be down to neuropathy and the advice your doctor should be heeding is:

False normal B12 results and the risk of neurological damage (U.K. N.E.Q.A.S Haematics.org.uk

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

and also

On page 11 in the book "Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. under the heading "Types of tests for B12 Deficiency" talking about the Serum Vitamin B12 Test it says:-

"However, it appears that these markers demonstrate B12 deficiency primarily in patients whose serum B12 is in the "gray zone" (a serum B12 result between 200 pg/ml and 450 pg/ml). We believe that the "normal" B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/ml

At this time, we believe normal serum B12 levels should be greater than 550 pg/ml. For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1,000 pg/ml. "

Ideally, according to the BNF those with Pernicious anaemia and other macrocytic anaemias with neurological involvement, should initially receive 1 mg of hydroxocobalamin on alternate days until no further improvement, then 1 mg every 2 months.

You don't say what your current regime is.

I think you should go back to your "Specialist" with a list of your symptoms and ask for a trial of more frequent injections until there is no further improvement.

I wish you well for the future.

[jillc39 in reply to clivealive]

surely this is neuropathy caused by vit b12 deficiency. sadly your team of 'experts' don't see to know this.

[fbirder in reply to jillc39]

surely this is neuropathy caused by vit b12 deficiency

Not necessarily.

Although B12 deficiency is a definite possibility, it isn't a certainty.

I wouldn't bother with a haematologist (although that may be because mine was a £*@£. I would see a neurologist. They'll be able to test your neuropathy and get some idea as to what may be causing it.

My neuropathy has been getting steadily worse over the last year, despite weekly jabs. The neurologist says that it's not diabetic neuropathy and it's atypical for that normally caused by B12 deficiency. He thinks it's an autoimmune problem. When I see him in six weeks time I'm sure he's going to give me a pulse of high-dose steroids.

But, with a B12 level of 340 (need to know the units, really) it seems to be a likely cause.

Have you been tested for PA? Have you had a gastroscopy to look for gastric atrophy? Have you though of supplementing with B12 yourself?

[expatkerry in reply to fbirder]

yes I've had a gastroscopy abd I have atrophic gastritis. I'm also producing antibodies paretial and anti intrensic factor. I've also wondered if it's some form of connective tissue disease. I think I'll ask to see a neurologist to begun with

[fbirder in reply to expatkerry]

That's good. So you definitely have Pernicious Anaemia, which means you'll be on injections for the rest of your life.

I see that you're on monthly jabs, but had no loading doses. That means it'll take quite a while for your B12 to get up to a reasonable level. But monthly jabs means it's more likely to stay at an effective level.

I would ask the doc for two weeks of injections, three times a week, just to boost your levels up to where they need to be. If that fails I'd try sublingual lozenges, 1000 to 5000 ug a day for a month or three.

Are you also taking folic acid? I'd recommend 800 ug a day.

[expatkerry in reply to fbirder]

I've just bought sublingual 1000 and was wondering how many to take. If I take these for a moth would it give me really high levels which would mean I'd have to come clean to my specialist? She gets me to have a full blood test every 3 months and I'm afraid if she sees high levels she'll stop or reduce my injections.

[fbirder in reply to expatkerry]

I would discuss it with your specialist. If she refuses a course of loading doses then you can ask her if it's OK if you take the tablets as well as the monthly jabs.

[Foggyme Administrator]

Hi Expatkerry. Just to let you know...I also get this, amongst other neurological symptoms. It also affects my shoulders and groins...muscles constantly feel as if they are going to tear...and the pain is not pleasant.

I agree with clivealive...your B12 level is still very low and needs to be much much higher for neurological repair to take place.

So....think you need more B12...as clivealive says, the regime for B12 deficiency with neurological symptoms is B12 injections every other day UNTIL NO FURTHER IMPROVEMENT in symptoms.

It sounds as if you're probably getting enough B12 to keep you alive but not enough for the body to repair properly.

Your GP should prescribe this for you. Most don't. They are woefully I'll educated about B12 deficiency...as are many consultants (gastrologist special, neurologists, haematologists included).

I'm currently doing replays to E-A-S in a post not far below yours (headed loading doses). May be worth taking a peek as the information may help you with your current dilemma. I'll be adding more to it later today.

Good luck and let us know how you get on.

[Foggyme Administrator in reply to Foggyme]

P.s. If you are getting neurological symptoms, it may be worth asking for a referral to a neurologist. But be warned, some (many) are not well informed about B12 deficiency. It may be a case of 'pot-luck'. xx

[expatkerry in reply to Foggyme]

thanks for your replies. I suspected this was the case. I live in France but it's the same story here 'but you're in the normal range'..... I'm currently on monthly injections since January but I've never had loading doses. I need to start throwing my weight around which is not me at all. I feel depressed at the prospect.

[Foggyme Administrator in reply to expatkerry]

Hello again Expatkerry. Oh dear...please don't despair. But yes, it is hard work fighting the system, wherever you are! Come back here and you'll find lots of advice, support and likeminded people.

Incidentally, I thought that in Europe B12 could be bought over the counter and self injected whenever needed. Is this not the case in France?

Know B12 can be purchased in Germany and, I think, Spain and Greece?

If you get no luck with your doctor, you can always do what many other here do (usually as a last resort) - but the B12 and inject yourself.

If you choose to go down that route, there are people here who can help you.

Good luck and I hope you start to feel better soon xx

[expatkerry in reply to Foggyme]

I don't think you can buy B12 over the counter here and self injection isn't a route I really want to take. The advantages of being followed by a specialist are that I have regular checkups for stomach/intestinal cancer and she gives me iron infusions as I no longer absorb iron. If I go it alone I won't have any of this. BTW if I come back to the UK I'd have to leave my hubby and three kids, but maybe I won't have a choice when the brexit finally takes place!!

[Foggyme Administrator in reply to expatkerry]

Oh dear Expatkerry. My heart goes out to you...what a lot to have to deal with (to put it mildly).

Sincerely hope that any brexit arrangements will enable you to easily stay where you are 😀.

Equal sincere wishes for a return to full health and lots of B12.

Please let us know how you get on xx

[Nicky-Richards]

My legs are always hurting especially first thing in the morning,They generally ache all day.Pain relief takes the edge off though.I hope you start feeling better soon.

[123harry]

have you had your vit d checked l was deficient and the tablets have really helped the pain in my knees and hands l was b12 deficient at 140 but no treatment offered so l take my own but vit d helped before the b12 supplements

[expatkerry]

thanks but my D3 is fine folates too