b12 after change to new GP

[Darwin196]

at last finally got b12 folate every 3 mnths after 5 year battle plus but nerve damage permanent off the scale pain baclofen antispasmodic at least memory and energy concentration improved from day 1 but the leg spasms uncopeable with gabapentin buprenorphine baclofen b9 b12 naproxen

[Sleepybunny]

Hi Darwin196,

I'm pleased you've finally got some B12 injections.

With neuro symptoms, I think you should be on the pattern for those with "neurological involvement" outlined in Indications and Doses section in link below.

bnf.nice.org.uk/drugs/hydro...

This is a B12 loading injection every other day for as long as symptoms continue to improve then a maintenance B12 injection every 2 months.

Have you been told by a neurologist that the damage is permanent?

I was left untreated for years, developed many neuro symptoms and was forced to treat myself. When I finally started B12 it took many weeks even months to start to see improvements. After I started treatment, I improved for 8 years running.

I have read that delayed or inadequate treatment of B12 deficiency can lead to spinal cord damage in some cases.

PAS have a leaflet about SACD, sub acute combined degeneration of the spinal cord.

pernicious-anaemia-society....

Have you considered joining PAS (Pernicious Anaemia Society)?

You do not need a PA diagnosis to join.

pernicious-anaemia-society....

Some UK forum members turn to treating themselves if NHS treatment is not enough eg extra injections from private GPs/beauty salons, some try taking high dose oral B12 (1000 mcg or higher) but this doesn't work for some people (didn't work for me) and some as a last resort try self injection (SI).

I left a detailed reply on this thread with links for those struggling to get adequate treatment, B12 documents etc

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

See also pinned forum posts.

I'm not a health professional.

[Sleepybunny in reply to Sleepybunny]

I found that a magnesium supplement helped with my muscle spasms.

[Darwin196 in reply to Sleepybunny]

Aha wow thanks so very much I had thought magnesium may well be sensible my go thinks as this has been left for many years and been treated first as fibro then with worse peripheral neuropathy finnally sudden severe back spasms loss off walking and incontinence put down to FND that this is a permanent state however from day1 I saw improvement in energy memory and cognitive seem clearer thanks Im o Pa site i think

[Sleepybunny in reply to Darwin196]

"thanks Im o Pa site i think"

This forum was set up by Pernicious Anaemia Society but PAS membership is separate to membership of this forum.

They have three categories of membership.

pernicious-anaemia-society....

PAS Contact Details

pernicious-anaemia-society....

[Sleepybunny in reply to Darwin196]

Have you been referred to a neurologist?

I would expect you to have a scan of your spine with the symptoms you describe.

SACD can be treated successfully in some cases if found early enough but treatment needs to be prompt and with lots of B12.

Next time you see GP perhaps you could give them PAS leaflet about SACD. Link in other reply.

You would need to be a PAS member to access whole leaflet.

Search online for "healing SACD b12 deficiency" more info. Some research articles may contain upsetting details.

[Darwin196 in reply to Sleepybunny]

Thanks yer was scanned 2 seperate times couldn’t find anything apparently

[newlandvale in reply to Darwin196]

It would have to be a certain type of MRI scan (and T2 images I think), and the whole spine not just the lower spine. When lower body symptoms involved then often just the lumber spine is scanned but doesn't include the spinal cord. Maybe PAS can help with this as I am no expert!

[Darwin196 in reply to newlandvale]

Pas ? Thanks

[newlandvale in reply to Darwin196]

PAS - Pernicious Anaemia Society

[Darwin196]

tbh I cant interpret blood results i dont know what they mean or what I’m looking at or for

[Sleepybunny in reply to Darwin196]

Perhaps you could post your blood test results on the forum.

Take care to remove any details that could identify you or health professionals to protect privacy eg names, ID numbers, addresses.

[tomdickharry]

That's quite a mixture of medication. I'm not sure what they each do, even less sure of how the mixture behaves. Personally, I'd want to know if I needed them all, and how they interacted.

[Katherine1234]

Darwin, I was left too long. I still have to self inject every other day since 2019. Also high dose folate daily. I found great improvement by adding benfotamine, B2 and high dose copper to the mix. The pain is less and I can actually feel my feet now. You want anything that builds up your myelin. My balance is and brain fog is still bad, but I am hypothyroid too and had spent many years being underdosed on medication.

[Darwin196 in reply to Katherine1234]

Ok great thanks so glad your feelinbetter

[waveylines]

I'm on daily injection as recommended by nhs neurologist. Been on them over 3yrs now. Made a massive difference. I could barely walk before. U should definitely be on b12 injections alternate days as per NICE guidelines for b12.

[BeachArt in reply to waveylines]

Daily injections? From an NHS neurologist??? How on earth did you manage that?!! We all need to see this neurologist lol

[waveylines in reply to BeachArt]

😂🤣 I have no pride and begged! It started out with him being amazed and delighted at my improvement. I had seen him a year earlier in a dreadful state. At the time he said its a tremor essential or orthodoststic he wasn't sure but could not do anything he said & discharged me! So GP referred me back to a different one but he insisted he saw me and directed staff to put me on his list. (I was trying to see a neurologist interest in gastro causes as I thought there was a connection....lol). Meanwhile I self medicated on b12 jabs and found I needed daily to prevent going backwards. To be fair he was genuinely surprised at the improvement and pleased for me. Did he order any tests? No?!!!

He asked me how much I was paying for my b12 so I told him. He said well u get it cheaper than the NHS can so carry on buying it....save the nhs money!!!

So I begged imfront of his large entourage......he gave in in the end as if he was doing me a big favour. I didnt like having to beg.....but needs must. That was about 4yrs ago. Later on got to see the neuro I'd wanted to on a third carefully worded referral who diagnosed gluten intolerance (likely coeliacs) Gluten Ataxia & essential tremor, nerve damage and agrees B12 can really help....no probs with daily. Uts the GPs who try to stop it!

[Darwin196 in reply to waveylines]

Wow get on you good on ya so glad ya got somwhere