Referred to Neurologist

[sue_higgins54]

Two months ago I was diagnosed as PA. The doctor did not ask me about any symptoms but when I started to read about PA I found that the tiredness, pins& needles in all my limbs, cramps and numbness in my toes could all be related. After 6 loading jabs I revisited the GP to say that my symptoms had not gone away & was told to wait & see. I visited again yesterday as still have most of these symptoms & the GP has reluctantly referred me to a Neurologist. Can anyone suggest what I should be doing to prepare myself for this consultation as I want to make sure I present all my information well & don't just get fobbed off. Thanks

[Marz]

From reading here and seeing the Guidelines for Folate and B12 Deficiency quoted - I see that when neurological symptoms are involved that injections should be every other day until symptoms subside.

Have your B12 jabs continued ? How are your folate levels ? B12 works with folate in the body - so it is often suggested for a GOOD B complex to work with the B12.

There are excellent Pinned Post to the right of this page. Am sure lots of helpful people who know more than me will be along soon.

Any chance you could self-treat ? Lots of advice here on the forum.

[fbirder]

Your doctor should have read the second paragraph in the British National Formulary entry for B12. The first paragraph says that PA requires 6 loading doses over two weeks. And that's where most doctors stop. Which is a shame as the next paragraph states that PA with neurological symptoms like yours requires 3 loading doses per week - until symptoms stop improving.

Did you see any improvement with the loading doses? If so then you really need to have a proper course of them.

If you didn't then the neurologist will do various tests to try and determine what may be causing your problems as there are many causes apart from PA.

I wouldn't do any self-supplementation until after the neurologist, as it's quite possible they'll want to test B12 again, and maybe do some other tests that would be affected by B12 supplements.

[clivealive Forum Support]

Hi sue_higgins54

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

.

The above is what treatment you should be getting

[Sleepybunny]

If i saw a neuro or any consultant again, (sadly disillusioned at moment) I would take the following with me.

1)Copy of "BCSH Cobalamin and Folate guidelines" (with relevant passages highlighted)

2)

fbirder summary of b12 documents.

Plenty of quotes to pass on if neuro has any misunderstandings about b12. There' a link to summary in one of the pinned posts and if you click the link to fbirder's profile page.

3) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I'd give it to the neuro in the hope that the next person with B12 deficiency symptoms would have a better experience.

4) A copy of local NHS B12 guidelines annotated where they differ from BCSH Cobalamin Guidelines.

5) Perhaps the most important for me would be to take a supportive person who is well informed about b12 deficiency and would speak up for me if neuro was unhelpful.

Are you a PAS member? If you are, it might be worth talking to them before your appt.

pernicious-anaemia-society....

PAS tel no 01656 769 717

"pins& needles in all my limbs, cramps and numbness "

these symptoms are normally considered to be neuro symptoms.

With a confirmed diagnosis of PA and neuro symptoms, I'm surprised you did not get loading injections every other day until your symptoms stopped improving...see page 8 BCSH Cobalamin and Folate Guidelines.

I am not a medic just aperosn who has struggled to get a diagnosis.