B12 made symptoms go away

[MEguy]

Hi. I had ME/CFS and it seemed to clear up 16 years later. About 3 years ago, I had fatigue, myclonic jerks especially while sleeping which woke me up and tremor feeling inside me. I took B12 sublingual for 2 or 3 weeks and the symptoms subsided. But then I stopped taking the B12 supplements and I have remained well so was it the B12 that cured my symptoms or not do you think? I have a diagnosis of ME/CFS not PA.

[charks]

There is a lot of misdiagnosis with CFS, ME, MS and FND. Many people on this forum have been diagnosed with the former only to find it is really B12D. The fact you reacted so well to a B12 supplement suggests that you have some form of B12D. The supplement you took may hold off the symptoms for some time, A lot of people only have an injection every 3 months.

[am111]

Any tests for ME/CFS that came positive? What tests for B12 were done?

You may have a mild B12 deficiency that is causing these symptoms off and on, and a shot a month might really help. Shots are definitely preferable to orals/sublinguals.

[Narwhal10]

Hi and welcome MEguy,

So, myalgic encephalomyelitis means that muscles, brain and spinal cord are involved which includes inflammation. The exact mechanisms are poorly understood but the biochemistry of the body can be impacted by genetic, epigenetic (gene expression, cell signalling), biological, infectious and physical or psychological stress.

So, as you can see it’s pretty multifactorial. The good news is that B12 supplementation appeared to be beneficial. It is rather difficult to establish cause and effect because so many variables which we are unaware of can change. The body does this wonderful process called homeostasis which we are completely unaware of. It self-regulates by lots of different processes from temperature to fluid balance and even pH. Or how alkaline or acid our tissues, blood and enzymes are.

If you notice symptoms returning try B12 supplements again. If they dissipate then you’ll have your answer. Part of the reliability of a scientific test is can results be replicated over and over again.

🐳

[Sleepybunny]

Hi,

My diagnostic experiences were not good. I got labelled with ME/CFS/Fibro and virtually all my symptoms improved or disappeared when I finally got B12 treatment.

ME/CFS is a diagnosis of exclusion meaning it should not be diagnosed until all other possibilities are excluded.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

I would post a lot more but having problems with typing and my computer.

I've written many detailed replies on this forum.

Lots of info in pinned post "Various PA/B12D Resources.

[Sleepybunny in reply to Sleepybunny]

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

[Sleepybunny in reply to Sleepybunny]

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS. Some bits may need updating.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

It's open to people worldwide and a PA diagnosis is not needed to join.

Testing for PA

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected

b12info.com/what-to-do-next/

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[MEguy in reply to Sleepybunny]

Thanks sleepybunny. I will look through the links later.

[thyr01d]

Hi MEGuy, I am similar to you, but don't have an answer. Diagnosed with ME/CFS and more recently with PVFS following covid but was convinced from symptoms after covid that it was B12 deficiency. Like you I supplemented B12 and many of the symptoms, like that internal tremor, have gone completely and, yesterday, out walking the dog I realised that for the first time in several decades walking was effortless instead of muscles aching and a feeling of wading through water. Maybe B12 helps us heal from ME?

[MEguy in reply to thyr01d]

Hi thyr01d, I too was diagnosed with PVFS in 1992. I am currently in remission and happy about that. However, on another ME board (science4ME), I asked this question too and some people said they have tried B12 for their ME and it made no difference to their symptoms. Someone said he tried T2 and that put him in remission for s while but he relapsed I think. so I don't know what to think now. I hope ME is something curable like B12. Have you had any B12 tests? Do you know what your levels are? WHat are your current symptoms still?

[thyr01d in reply to MEguy]

Hi MEguy, before I forget, my (then) GP said she had seen people's ME symptoms resolve with vitamin D. I did have B12 tests but it was rather pointless. I was told I couldn't be tested until a GP had seen me but that was a three week wait and I was having nasty symptoms and know these are sometimes irreversible, so I began supplementing before the tests. Current symptoms are a kind of lethargy and difficulty concentrating, sharp stabbing pains, dizziness and that sort of thing, the tingling, pins and needles and many other symptoms have all but gone from supplementing B12, however I am also taking vitamin D having had covid (again) recently - there are always so many variables, for instance I am prescribed Liothyronine (T2) for the thyroid and that helps enormously. Levothyroxine didn't. How is your thyroid?

[MEguy in reply to thyr01d]

Hi thyr01d, my thyroid has always been ok according to my GP and tests I have had. The ranges are in the middle or more and TSH about 2.0 or so. I am getting another test done though while I am feeling well including thyroid function tests and B12, ferritin etc just to see what the results say while I am well. I still get tinnitus though. Most doctors won't prescribe T3 let alone T2. So you must have an understanding GP. I am glad some of your symptoms have abated taking B12. Maybe you would benefit taking shots instead of supplements.

[thyr01d in reply to MEguy]

That was a mis-type, I meant T3! I think you are right about shots but since I was supplementing when bloods were tested GP doesn't think there's a B12 problem. I wonder what you have done right and hope you remain well now.

[carer999]

I was diagnosed with ME/PVFS in 1991. I think it was just a dumping ground. Not many tests done in 1990s. 2007 underactive thyroid diagnosis. In 2016 tested for B12 and vitamin D, deficit in both. Much to GP surprise.

I started B12 self injection to supplement GP jab and felt better. I have now lost my nerve for SI and haven't done it for 3 years. Health has got worse but new issues have also arisen so don't know for definite if the decline is due to lack of injections or not.