B12/ferritin/vegan/tinitus/twitching/joint popping/pins and needles

[Charlotte1234]

Hi,

Since August I have been having strange neuro symptoms (this is the 8 month now).

It first started with 2 isolated incidents of vertigo, never had it before.

Then came the twitching, all over my body jumping from place to place, mostly legs, arms and back. At the same time I developed all over joint popping, crunching and clicking (painless). Then nerve pain in my fingers little little electric shocks.

In the last two weeks I have now developed tinnitus in my ears and have been waking up with dead hands as if I have slept on them which take some wiggling to wake up then feel a bit like pine and needles.

I am awaiting a neuro appointment at my hospital after seeing my GP.

I follow a vegiterian diet and consume

Little dairy.

I have had no problems walking/talking etc but I'm convinced it's MS or some other awful disease. I'm 27 years old and a newly qualified nurse. All of this started when finishing my degree and being under a lot of stress and very anxious (I'm an anxious person in general) so I put it down to stress but 8 months later I am developing new symptoms. Here are my blood results from October - doc not concerned about any of them - I think ferritin and B12 a little low?

Ferritin - 32

HB - 135

TSH 2.0

Vit D - 93

Calcium 2.57

Serum Folate - 7.9

B12 -380

Please help I'm so defeated and scared, could it be PA? X

[clivealive Forum Support]

Hi Charlotte1234 Is there a history of P.A. in your family?

[Hidden]

Your description could b me!

[Hidden in reply to Hidden]

And my b12 was told today is 334 and folate 4.5

[Gambit62 Administrator]

Question is really if it is B12 deficiency ... and then what caused the deficiency.

If you are vegetarian and eating little dairy/egg then I'd strongly suggest that you actually try to look at if you can up the B12 in your diet - or else think about using some bog-standard supplements to make sure that you are getting enough B12.

[Sleepybunny]

Hi,

At least some symptoms you describe, can be found on lists of B12 deficiency symptoms.

pernicious-anaemia-society.... click on Checklist.

b12deficiency.info/signs-an...

What to do next?

b12deficiency.info/what-to-...

BSH Cobalamin and Folate guidelines

If you are in Uk, I'd recommend reading whole document.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate deficiency" should be on page 3 of listed guidelines

Flowchart below from BSh Cobalamin guidelines.

Makes it clear that people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor antibody) test and start initial B12 treatment, My understanding is that this applies whether B12 id low or within range. IFA test can help to diagnose PA but is not always reliable. It is possible to have PA even if IFA test is negative.

stichtingb12tekort.nl/weten...

As you're vegetarian, doctor may think your symptoms are possibly due to diet. There are many possible causes of B12 deficiency and people can have more than one cause at the same time.

Causes Of b12 deficiency

b12deficiency.info/what-are...

B12 deficiency Normal range result

I was highly symptomatic with results in the 300 -400s. Its possible to have a severe B12 deficiency with normal range results (see links below) but this is not always recognised by Gps.

bmj.com/content/349/bmj.g5226 see 5th summary point

b12deficiency.info/b12-writ...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS. Book is up to date with UK guidelines.

"Could it Be B12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about b12 deficiency with lots of case studies. Reading this book was a lightbulb moment for me.

Lots of B12 info in pinned posts on this forum. I found fbirder 's summary of mainly UK documents useful to read.

Full Blood Count (FBC)

The results on the FBC can be useful clues as to whether or not a patient has iron deficiency, B12 deficiency, folate deficiency.

labtestsonline.org.uk/under...

patient.info/doctor/macrocy...

Have you been tested for Thyroid Problems?

thyroiduk.org.uk/tuk/index....

Coeliac disease?

coeliac.org.uk/coeliac-dise...

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

I hope you find answers. If you think B12 deficiency is a possibility I'd suggets making sure you are well-informed as sadly some docotrs are not as well informed about b12 deficiency as they could be.

[Hidden]

My wife had very similar symptoms and the twitching was dealt with when she went onto Pramipexole, low dose dopamine. She was also found to have low Ferritin levels and takes normal Iron tablets. This doesn't work for everyone but when it does it works rather well. I am not medically qualified so this is just an anecdotal comment.

Best of luck.

[j178234]

Hi, I've been having exactly the same fir 7 months now. Been to see a neuro and he is baffled! Did you find out anything? I'm desperate now! By any chance have you had a baby recently? Mine is a year old,....seeking links.

Jen

[Shellyram]

Hi Charlotte 1234 did you ever get to the bottom of this? I too have just been signed off as a competent nurse only last week and have been having these symptoms for some time. I have been on Ferrous Fumerate for approximately 8 weeks as my Ferritin was 7. My B12 is 185, however will not be treated as apparently this is not deficient. I feel like my symptoms have worsened the last few weeks despite being on iron tablets. I too am at my wits end and would love to hear if your resolved. Thank you.