Advice needed please

[jeeves19]

Hi there. I’ve just come across this site and am curious as to what I’ve been reading. I have Parkinsons and am now in my fourth year. Doing okay really but am concerned about recent increases in neuropathy. Went up the GP yesterday who pointed out that my B12 levels were fine. How do I convince her that they might not be fine despite her data? And surely a doctor knows better than I do?

Any advice much appreciated. Thanks

[clivealive Forum Support]

Hi jeeves19 do you know how "fine" your B12 level was?

You might like to refer your doctor to the following:

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask her to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[jeeves19 in reply to clivealive]

Thanks for a most generous response. I’m sure she’ll still hold onto her comfort blanket of ‘you’ve been tested 3 times now’ but I’ll do my best !

[fbirder]

Ask for a homocysteine test. onlinelibrary.wiley.com/doi...

[jeeves19 in reply to fbirder]

2 tests of B12 in past 2 years: 346 mi and 342 mi. Blood test for diabetes in mid range. In the absence of alcoholism have I got to put this nerve damage down to the vagueries of PD and/or idiopathism? I hate the latter as you don’t know what the solution could be😕

[fbirder in reply to jeeves19]

As I frequently say, there are 80 possible known causes of peripheral neuropathy. The only person who can accurately diagnose them is a neurologist. So I would recommend asking to see one of them.