Where to next?

[Wolf79]

So I have hit a small impasse with my doctor and I'm not sure where to go next.

To summarise where I am in my B12 journey, I was diagnosed B12 deficient almost 1 year ago, I was not given the Intrinsic Factor test before commencing loading doses. I was originally started on normal loading doses, until after some reading realised I had neurological symptoms and was moved on to every other day loading.

I managed to convince my Dr to allow this to continue for around 3 months until Christmas. In the November he wrote to a consultant neurologist as nerve conduction tests had revealed 'clinically insignificant carpal tunnel'. In January I convinced the GP to allow me to move to weekly doses rather than going straight to 2 monthly. After 3 weeks the tiredness, lethargy and brain fog returned and I had severe pain in my elbows to the point I had to wear splints to bed, in order to be able to sleep.

At that point I moved myself (SI) back to every other day and things once again improved. Then Covid hit and I haven't seen the Dr since, I have however had a letter, that stated the neurologist had got back to him (after 6 months) and suggested that the paresthesia was more likely to do with the carpal tunnel and not the B12 deficiency. The main problem with this is the fact that I actually think I have cubital tunnel, and secondly whether that has actually been caused by nerve damage due to the deficiency. Unfortunately I am not sure I am going to be able to convince the Dr of this, also if I convince him to get a referral to neuro I may simply end up with this consultant who clearly isn't knowledgable on B12 deficiency.

I would like to get a firm diagnosis, from reading on here I know how easy it is to be fobbed off otherwise, but I'm not sure to whom I should ask to be referred next? My Dr seems convinced due to the negative intrinsic test and the fact I don't have macrocytic anaemia that I am not PA (despite Dr Hajo Auwerdas assertion that this is not a significant factor in proving PA), however all the evidence points to the fact that I am, in particular the change I have seen due to the injections.

So any advice is welcomed, do I try haematology? Although my B12 levels will be sky high at the mo, not sure if gastro might be any help as I don't know if any issues I have there are B12 related (believe I have an occasional bout of undiagnosed IBS).

Thanks for reading.

[Nackapan]

You say you wasnft given the intrinsic antybody test at the start but later tiu say it was negative ?

I too have not a PA diagnisis.

I'm presently on a mix of prescription b12 2 weekly ans have bought some to do inbetween.

If you know tou are beniffing from frequent b12 injections perhaps you could self I ject more whist toh get yhd regime sorted with youd doctor.

Concentrate on the symptoms that debilitated you thd most and get an appropriate referral.

I understand tour predicament as a year longer than you and floundering ad well. Referrals are taking a long time at present. I'm still waiting g since December 2019.

So have your injections continued at your surgery? And youvr been si inbetween?

The main thing is to continue with your treatment keep going with the surgery b1e injections too to stay in the system. Get what teferrsks you can. Tou may not get the same neurologist.

[Wolf79 in reply to Nackapan]

Thanks for your reply. Should have been a bit more clear on the IF test. Was done about 2 months in to treatment after I asked for it.

I have been Self Injecting almost exclusively since the start, I have a job that means I travel a lot, so managed to convince the Dr to prescribe ampoules and let me do the rest.

Had prescriptions until February, have been self sufficient with German supplies since then.

[Nackapan in reply to Wolf79]

Oh goodness so prescription just stopped??

Sounds like you need a double appointment so you cs review everything . Or write to your GP.

That's what I do. Its all DIY it seend. I have no direction either. It wad the Opticusn that thought the latest referral a good idea and backed his statement with a back up report to Gp

.