Internal vibration/IF test: I have... - Pernicious Anaemi...

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Internal vibration/IF test

SuD7 profile image
SuD7
22 Replies

I have recently developed an internal vibration at my tummy. It feels like I have an electric toothbrush in it. I had IF antibody test last year but was negative though my Gastric Parietal Antibody was positve. I had endoscopy and advised that I have “mild Gastritis”. I take a sublingual B12. Would it be worthwhile re-doing IF test given I may have B12 levels higher than what GPs deem deficiency though not sure what mh current level is.

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SuD7 profile image
SuD7
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22 Replies
fbirder profile image
fbirder

An IF antibody test is unlikely to tell you anything useful.

If you believe you are suffering the symptoms of a B12 deficiency, despite having 'normal' levels of B12 in your blood, then an MMA test might be useful.

Methylmalonic acid is a chemical used up in one of the reactions mediated by B12. If there is not enough B12 in the cells then the levels of MMA will rise.

SuD7 profile image
SuD7 in reply tofbirder

I had MMA test in March by viapath and it wa s fine however my HCY was at 15 but my folate was 4.7. I restarted folate and B12 (had stopped in October) to try lower HCY. Havent retaken test due to lockdown and well getting phlebotomist may prove tricky.

pitney profile image
pitney

I also get the vibrating feeling in my stomach from time to time and have mentioned it to numerous doctors none of which have come up with any explanation for it, but it is a very strange sensation , I think there was someone else on this forum a while ago that also mentioned this but I can"t remember who

All best wishes

SuD7 profile image
SuD7

Yes, ive put link below.

nutris.viapath.co.uk/pages/...

fbirder profile image
fbirder

There are two MMA tests, urine or blood.

The advantage of the urine test is that the same sample can be used to check renal function as kidney disease can also raise MMA levels.

pitney profile image
pitney

Yes I get it a few inches above my navel and have always described it as feeling as if I have an electric toothbrush inside me. Many thanks for your reply thats really interesting.

PS I have had it going on and off for about 25 years

I agree that the IF test is a waste of time. It won’t tell you anything you don’t already know. If you’re GPC test was positive then you have PA. in terms of the buzzing and swooshing in your tummy that is something I have too. My gastroenterologist said it was likely to be the nerves that cause food to moved along the small intestine possibly not working as well as they might and possibly gas! A lot of possibly’s in there; he wasn’t sure but was guessing. It makes sense but who knows? I have also had it for years! Hopefully that helps in some small way!

SuD7 profile image
SuD7 in reply to

Hi Martin, the Harmatologist said that can mske diagnosis of PA due to GPC antibodies. Plus da t that i have been supplementing with dublingual so my levrls are good. So confused by it all.

in reply toSuD7

So it is good you have a diagnosis of PA as you know what is wrong with you. You now need B12 injections. The treatment regime is 6 injections over 2 weeks and one injection every 2 to 3 months for life. This is the NHS standard protocol for PA, which you have got. My suggestion is that you insist on getting injections right away to prevent any irreversible nerve damage occurring. You fo not need any more tests to confirm PA and it needs to be treated properly. Good luck with it. If you need help, I think you should consider joining the PA society if you are not already a member. They can help you get the treatment you need.

SuD7 profile image
SuD7 in reply to

Sorry my above message should read”cant” diagnose me due to GPA. My blood levels are too high also due to supplementing with sublingual.

in reply toSuD7

Then another highly sensitive tests is a serum Gastrin test. Easy to do. This is highly specific to people with PA. Why? Because gastrin is ‘switched off’ by stomach acid. If you have PA your gastric parietal cells are attacked by your immune system in error and cannot produce acid or only very small amounts. Therefore if your serum gastric level is high it is highly suggestive of PA. I don’t know why doctors don’t do this test given this is the case!

SuD7 profile image
SuD7 in reply to

Where could i do this. GP will not do any more testing for me other B12/Folate serum

in reply toSuD7

I would try Medichecks. Your GP would have been my first suggestion.

Chloebaby profile image
Chloebaby

Hi

I too get the internal vibration tremor. Frequently it’s in my chest up to my shoulders. Occasionally it’s visible to others. Once got it a few inches below my navel as if whole front and back where vibrating.

When it happens in my chest it leaves me with a feeling of doom. Sometimes I wake up with it and it feels like it’s been going a while.

When I looked up internal tremors on internet it said tremors is a very common symptom of lots of diseases/illnesses which reassured me, and there were numerous suggested treatments.

I’ve got functional vit B12 deficiency which I think means my problems at the cell level as my MMA results are high ( although renal problems need to be excluded).

I often find clinicians put a lot of things down to “stress” which I don’t find that helpful in most cases as often I think they just don’t know. If you have vit B12 deficiency of course your body is under stress, but saying your internal tremor is down to stress stops them from working through the numerous other possible causes, and treating it appropriately.

I wish you good luck in dealing with your symptoms.

Someone mentioned the MMA test. I used Viapath for this and happy with their service. Also had it tested via NHS neurologist which was sent to a lab in Wales.

kittyflowers profile image
kittyflowers in reply toChloebaby

Well said. I agree.

My symptoms are very similar re internal vibrations and tremor. Also the feeling of doom if the tremor is in my chest though mine is usually just pelvic region seeming to originate from sacrum. It makes me feel very nervous. IRS a physical feeling if nervousness rather than an emotional anxiety.

Chloebaby profile image
Chloebaby in reply tokittyflowers

Hi

Thanks for your comments. It’s the same for me, the feeling of doom comes as part of the internal tremor, not in that mood prior to tremor.

Hearing other members comments is really helpful. I read article posted today which explained why I have all these lesions on my arms - low b12. Without this site I would never have related it as a sign of deficiency, just like the internal tremors can be a sign (realise they can be caused by many other factors too).

SuD hope you’ve found what you were looking for.

Kitty flowers I sympathise with you , and all forum users, who have these internal tremors.

Take care.

SuD7 profile image
SuD7 in reply toChloebaby

Thank you for kind response.

kittyflowers profile image
kittyflowers in reply toChloebaby

I too sympathise with you. Check in again in a while. It's important to mark progress.

I have personally felt improvement from injecting methylcobalamin ...having tried exclusively hydroxy for months.

HopetoB12better profile image
HopetoB12better

Mobile phone buzzing - I’ve had that feeling also! I was diagnosed w b12 deficiency 7 weeks ago and have been on injections and they are helping a lot! But I used to get that strange vibrating feeling around my hips and groin area. It felt exactly like I had a cell phone on vibrate in my pocket!!!!

Chloebaby profile image
Chloebaby

Hi CuriousNess

Chloebaby profile image
Chloebaby

Hi CuriousNess

It was about a year ago so I can’t recall exactly but I think I received the test kit within a week of requesting it.

I sent the blood off for testing to Viapath along with other blood tests to a different lab. Viapath took a week approx to record receipt of my test but other lab noted receipt of my test within 24 hours of me sending.

MMA test carried out via NHS neurologist seemed to take a while to get results from lab in Wales.

Something I noted was the Viapath unit of measurement used was different from that used by the lab in Wales.

If it does take a few extra days I thought it was worth the wait as my other test results were not definitive (serum B12 somewhere between 200 and 370 and active B12 was in the indeterminate range 25-50).

I got blood drawn at a local private hospital costing about £40, but that did 3 tests, one blood having to be centrifuged before sending (I think for active B12 test) which they kindly did. Very happy with their service.

Hope this helps, but you can always email Viapath to check your test is on it’s way which might give you some reassurance. I remember waiting anxiously for the tests to arrive and it felt like a lifetime before I got all the results. But definitely worth it in the end - although I still need to check out my renal function so I can be clear that it’s low B12 causing the problem and not my kidneys.

Then there’s the whole story about how NHS professionals interpret the results...

Hope testing all goes well. Good luck

SuD7 profile image
SuD7

It was before covid and dont think it was long

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