Update on neuro appointment

[Numbsew]

Saw neurologist for follow up appointment today. MRI scan all clear but I’ve been on injections for over 6 months and am a lot better.

My B12 was at 319 symptoms included exhaustion, energy levels very low, shooting nerve pains in limbs, pin prick feeling in fingers and toes, on two occasions lost all sensation down right side for a day, tinnitus, insomnia, deep aching all over body; poor concentration; feeling muddled; Very stiff feet in the mornings, plantar fasciitis, very dizzy, slurred speech (intermittent); tongue swollen, tingly and sore on right side; tingling in corners of mouth; tingly or numb on right side of face occasionally, tingly or numb around lips and mouth; intolerant to noise; forget what saying or writing, mid-sentence; headaches; mild shuffling gait/slight limp on right; often trip up, unable to stand on one leg to step into clothes; weak or leaden legs; dropping things, clumsy; bump into things; hair falls out; sometimes vision feels out of focus, even after changing lens prescription; temperature disregulation with associated pain especially at night; some altered sensation 2nd and 3rd toes right foot; slight urine incontinence/unusual bladder sensation; brittle, flaking nails; mood low; irritable, loss of temper (out of character).Shortness of breath; mild chest pain.

Also Tendinitis which I’m not sure is related.

SI daily hydroxocobalamin since November 2018 and following protocol. All symptoms improved, many disappeared!

Neurologist said my symptoms and history are atypical of b12 because they happened in fits and starts not gradually. They did come on very gradually so that I hardly noticed initially and I told him so.

He said that last time I said it as this happened and then that happened etc.

He said the haematologist saw no enlarged blood cells. I pointed out that I am also have low ferritin which makes blood cells smaller and asked if they might cancel each other out. He said no that doesn’t happen.

I told him that when GP stopped b12 within 2 weeks I had bladder problems, painful feet and slurred speech again. Since then I have self injected daily and I am better.

He has no idea why I am so much better on the b12 (he could see I was) but thought I should wean myself off it over a few months and then test to see if I am deficient!!! No thank you.

[wedgewood]

So very pleased that you are benefitting from the B12 injections . Great news! You are illustrating how ignorant the medical profession in general is about PA /B12 deficiency ! Carry on 💉💉💉💉💉! You know that you cannot overdose . Very best wishes .

[Numbsew in reply to wedgewood]

Thank you. I will!

[Ashbe]

Interesting list of symptoms as I have most f them. I am told B12 is normal but vitamin D not. My thyroid fluctuates and they won’t treat as it rallies!

My neurologist initially said peripheral neuropathy but haven’t no sent me for tests he has never called me for follow up. My GP has tried various things ending with my becoming addicted to pregabalin. Thankfully now off that. Symptoms getting worse by the day.

Seems to me that we are left to struggle on no able to make plans etc as we don’t know tillnthe day how we met get feel.

[LoveSeaside]

Hello Numbsew, just wanted to say I identify with 95% of your symptoms, I do not have a diagnosis of PA, but did manage to get six loading doses as my b12 was around 178. Dr not willing to do more injections, I’m not feeling the same benefit from sublinguals and I keep thinking about SI. I’ve had a very muddled few days, poor concentration and speech, but reading how you improved from same symptoms as me has encouraged me to take the plunge and order some! Thank you.

[Sleepybunny]

Hi,

Glad to read that your MRI was fine. Have you got a copy of the MRI report/letter to GP?

My experiences made me want to have proof of anything doctors said.

Sometimes I suggest following up unhelpful appointments with a letter but if doctor is unwilling to learn from new information probably not worth it.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

"He said the haematologist saw no enlarged blood cells. I pointed out that I am also have low ferritin which makes blood cells smaller and asked if they might cancel each other out. He said no that doesn’t happen. "

If you see him again or write then you could point out that BSH Cobalamin and Folate Guidelines ( a UK document) indicates that a large percentage of patients with B12 deficiency do not have enlarged red blood cells.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

The medical term for enlarged red blood cells is macrocytosis.

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count

labtestsonline.org.uk/tests...

Blood Smear/Blood Film

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

I would hope that the haematologist ordered a blood smear, where someone looks at a sample of patient's blood under a microscope.

He might be interested in this English language article from Dutch B12 website

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Help for GPs/specialists

1) PAS website has section for health professionals.

pernicious-anaemia-society....

I am not medically trained.

[Llawry]

I had much the same experience with my neurologist and with my family doctor. They gave me all the reasons it can’t be a b12 deficiency but weren’t willing to read or look at anything I brought in. Sorry you are going through that! Keep on going with your treatment - things do get better but it takes a long time (maybe longer than you expect!)

Take care and all the best.

[Numbsew]

I was paying for this one too!

[lownskater52]

Congrats on all of the progress. Glad to hear you're feeling better as it inspires hope.

How are you getting the b12 in order to self inject? My doctor only prescribed me b12 shots for once a week and I have to go into the office to do so. I've had to buy the rest privately from heslth clinics and its pricey.

[Numbsew in reply to lownskater52]

Online from Germany, google VersandApo.