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Could someone help me make sense of what I need to do now?

Worriedatthemoment profile image

After several weeks of peculiar symptoms: numbness and tingling in arms and legs, weakness and pain I asked for a blood test at my GP surgery.

According to this test I fall within the normal range for B12, although I know that as this was a serum test, the results are not always trustworthy when it comes to diagnosing a deficiency.

I am having a head MRI in a few days, which I am terrified about. I have pretty much convinced myself I have MS.

My question is, what do I do now? Do I push for a further blood test that measures at a cell level? Or do I start taking high dosage oral B12 to see if this makes a difference? I'm pretty sure my GP won't offer injections as the level on this test is not considered low.

I am just very worried that if I don't take swift action I may end up suffering permanent nerve damage (obviously a diagnosis of MS would be a different story entirely)

I suffered terrible damage to my peroneal nerve during the birth of my son 6 years ago that resulted in foot drop and learning to walk again properly with a newborn. It was a terrifying time that I don't want to repeat and as I have recently been made a single parent, my anxieties surrounding my health are truly off the scale right now.

I would be so grateful for any advice regarding interpretation of my blood results and what my next steps should be.

Thank you in advance for taking the time to read.

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Worriedatthemoment
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9 Replies
fbirder profile image
fbirder

To rule out a B12 deficiency you can ask for tests for methylmalonic acid and homocysteine. These two chemicals are used up in reactions mediated by B12. If there's not enough B12 getting onto the right places in the cells then the levels of these will be raised.

Download this and highlight Summary Point 2. onlinelibrary.wiley.com/doi...

However, many doctors seem to think the tests aren't available. They may be right about hCys, but MMA should be available at a hospital pathology lab. You can even get it done privately.

Worriedatthemoment profile image
Worriedatthemoment in reply tofbirder

Thank you so much for your informative response!

To be honest I'm a little stuck as to what would be the best course of action right now. I've ordered some high strength b12 supplements and unsure as to whether I should start taking them right away and see if they make a difference to my symptoms, or hold off to see if I can get an mma test, as I know the supplements would skew the results.

Brain fog is NOT helping!

I suppose what I'm asking is what others would do in my shoes?

Nackapan profile image
Nackapan in reply toWorriedatthemoment

Try and get the blood test. Then try your supplements?

Hope your brain mri soon.I've had 2 and the waiting in found hard. Good its being done .

Step by step

Take care

Worriedatthemoment profile image
Worriedatthemoment in reply toNackapan

Thank you for your kind words. My scan is Tuesday. I've opted to go privately as I simply couldn't wait the forecasted 4 months for an NHS scan.

I'm clinging onto the fact I haven't had any real vision problems as this is a significant early symptom of MS.

But you're right, the waiting is excruciating

Nackapan profile image
Nackapan in reply toWorriedatthemoment

I had the MRIs on the NHS but as the Gp wouldn't comment on the first report the wait for a neurology appointment to read it and explain was longer than the wait for MRI. Which was a good sign i thought, but it was the not understanding it.

As white lesions and scattered t2 and inflammation

ect was mentioned on the report that was printed off by Gp and handed to me I couldn't wait the? 14 weeks.

I paid to get it read as not helping me not knowing.

The tiny bleeds White lesions astrophy ect were all within acceptable levels 'for my age'

So if you do get it given to you I hope you follow up with the same service you had the mri with to get it explained sooner rather than later.

It was the best money spent at the time . As was having / vision problems and migrains /chronic headaches ect. Stress is dibilitating and makes any symptoms worse. So anything to reduce this if you can is a good thing. TC

fbirder profile image
fbirder in reply toWorriedatthemoment

If you take oral supplements and the stop the symptoms then MMA result is irrelevant.

If you take oral supplements that aren't absorbed then neither symptoms nor MMA will be changed.

The grey area is if you take oral supplements and enough is absorbed to reduce MMA but not enough to stop the symptoms.

So I'd agree with the advice to hols off for a short while and see if you can get the test results first.

Worriedatthemoment profile image
Worriedatthemoment in reply tofbirder

Ok, thank you, that's cleared that up.

Is there an average on how long is likely for the supplements to make a change to symptoms? I'm guessing it can vary widely from person to person?

fbirder profile image
fbirder in reply toWorriedatthemoment

It varies enormously. Different people react differently as do different symptoms.

Nikolai666 profile image
Nikolai666

I realize its an old post but I was wondering has your foot drop healed? And what was the result of the mri scan? Thank you

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