No change after loading doses

[Mag999]

Still having extremely weird symptoms, widespread persistent numbness, muscle spasms and tightening, palpitations, very weak and generally feel ill, lymph nodes up in neck. My next injection is in 3 months so rather than argue I have ordered my own. I don’t know if they tested for PA I was just told I needed injections for life. I don’t know how long to leave it, monitoring how bad it gets, or if I need other supplements , am drinking coconut water and supplementing iron and magnesium with tablets. I am supposed to be seeing a neurologist but urgent appointments don’t seem that quick to arrange already waited 4 weeks. Does everyone see a neurologist? Am remaining calm but concerned this isn’t “just” b12. Has anyone been diagnosed with other conditions on top of this deficiency? Bit worried it is ms/ other unpleasant neuro condition, although I realise b12 can mimic symptoms. Feeling unwell enough to go to a&e but not sure I will get any answers.

[clivealive Forum Support]

Hi Mag999 Loading doses should continue until no further improvement in symptoms

Get your nurse/GP to read the NICE guidelines and also ask to have your Folate level tested.

bnf.nice.org.uk/drug/hydrox...

I wish you well

[Mag999 in reply to clivealive]

Thank you, folate in normal range apparently

[fbirder]

Yes, I saw a couple of neurologists (a local one and a London expert) about my neuropathy that started when I started my injections. He told me it was nothing to do with B12, predicted what would happen in the time before my next appointment - and got his prediction spot-on.

[miravet in reply to fbirder]

What was his prediction? Or would you rather not say

[fbirder in reply to miravet]

He predicted that it would stay the same, after having got progressively worse over the previous 18 months. He was right.

He said I had IAN - Idiopathic Axonal Neuropathy. Nobody knew what caused it but it was more common in tall men in their 60s. I was 59 and 195 cm. It will stay the same with a very gradual deterioration over the decades.

I was relieved because my early symptoms had fit with Guillain-Barré Syndrome, an autoimmune disease that isn't at all pleasant.

[Nackapan]

Yes I had brain MRI s and seen 3 neurologists . First one in 'normal times ' was a 15 week wait. I actually paid to see one to interpret brain scan as Gp worried me . All 3 had conflicting ideas of what was causing my symptoms . No conclusions . I carried on with every other day b12 injections after a 'fight/struggle with Gp practice. I had a 5 week break but was supposed to wait 3 months.

Quote bnf guidelines every other day until no further improvement.

Go by your blood results what to supplement

I was ill enough to go to A and E and although very grateful for head ct scan (I'd had a bad fall as well hitting my head)that was okay. I was told I was having an anxiety attack. I wasnt. That was before I got my blood results back and it was found b12 deficiency. So far nothing else been found . Thyroid is checked .folate levels iron ferritin vitamin d.

I've been waiting 8 months si far for an appointment to a neuro opthalomogist .

Tou can only treat what has been found. So push for more injections.

It took 3 months for me to see any improvements at all on every other day injections.

Hope you get answers or injections soon. Your folate should've have been tested at the same time as b12 . The labs normally do this as when I only wanted folate checked b12cwas dine as well.

[Mag999 in reply to Nackapan]

Thanks, will keep up the injections, they had finished but just been sent an appt for a 7th one so maybe they are looking at the guidelines