Hi there, I posted over a month ago when I had written to a GP and was waiting for an appointment - full details here:
In summary, I was diagnosed this year with RRMS after bad spell of vertigo and mild lesions showed on MRI, but then began to suspect B12 deficiency because of my symptoms.
So last Monday (23rd) I finally saw the GP I'd been waiting for - and she completely dismissed the possibility of B12 deficiency or PA. My serum B12 is within range (I'll post results below), the test for IF antibodies was negative and MCV was normal. I tried to argue politely that I'd read that none of these results is definitive in light of my symptoms, but she just thought I was trying to avoid the MS diagnosis, which is of course a 'perfectly normal' thing to do.
I felt so helpless after this appointment and thought - maybe she's right, maybe I am just deluding myself. But I decided to email Dr ******** explaining my story and my results, just to get a second opinion. He phoned me within an hour of me sending the email and said that I'm severely B12 deficient, don't have MS, can probably be 95% cured and should begin self-injecting as soon as possible.
So I put in a request on B12D the same day for some hydroxycobalamin as he'd suggested. Because I'd have to wait and it seemed that my GP was done with me, I began supplementing with a sublingual 1000 micrograms methylcobalamin that evening and have been ever since. I also composed a very polite but detailed and referenced letter to my GP explaining why I disagreed with her and unless they could put me on a therapeutic trial, I would have to self-treat.
The one test the GP hadn't done this time and should have since I'd had problems with it in the past was serum ferritin (this was down to 5 ng/ml (13-300) in 2013), so last week I also made an appointment to have bloods taken for that. The appointment for this was today, and it turns out that on getting my letter, the GP has forwarded it to haematology and ordered tests for thyroid function, liver function, full blood count, as well as ferritin.
Does anyone know - will the sublingual B12 skew these results? I wouldn't have taken it if I'd known, but I've become scared of suffering further damage. Certainly, my B12 result in May was 176 pmol/l (110-664), and ten days after taking one of these (again before I knew I'd be tested) it was 201 pmol/l (110-664). Dr ******** thought that this might easily have affected that result, but I've no idea about the others.
I really want to begin self-injecting as soon as I can (although it is a bit scary!) but with these recent developments I've no idea what to do. I'm also slightly dubious about Dr ******** certainty - although I hope he's right, I've read that things are rarely so straightforward.
Results from Oct 2nd:
My haemoglobin was 142 g/L (115-165)
Mean cell volume; 91 fl (82-100)
MCH: 30.4 pg (27-34)
MCHC: 335 g/L (324-355)
Sodium: 140 mmol/L (135-145)
Potassium: 4.7 mmol/L (3.5-5.0)
Urea: 2.6 mmol/L (2.5-7.5)
Creatinine: 78 umol/L (65-140)
B12: 201 pmol/l (110-664)
Folate: 7.0 ng/ml (3.4-10.4)
and I tested negative for I.F. antibodies.
My ongoing symptoms include numbness/tingling, slight vertigo, overwhelming tiredness, eye tiredness and pain. I think I have felt slightly better since taking these sublingual tablets, but it's hard to say.
Sorry for the long post, any advice appreciated!