Cost of private treatment??

[p101]

I have had 6loading doses (a month ago now) and symptoms were improving for first few weeks but gone down hill. And now keep losing feeling in the top of my right thigh/pelvis area. Not getting anywhere with gp (struggle to even get an appointment!) Not looking like they will give anymore until 3 months after. But I don't feel it's enough. Now being assessed for other things from lupas to Ms. But I'm frustrated as symptoms all point to b12 deficiency still but won't take on board nice guidelines. Just keep getting bloods are normal!! And got a lecture from a snippy nurse who told me I was a teacher not a doctor!! She also told me too much could be dangerous!! (At that point I stopped arguing when I realised she really had no clue!) Long story short I'm now considering going private to get these injections more regularly. Any idea if it's possible? How much it would cost? (I don't want to buy of the Internet or self inject). Thanks x

[Gambit62 Administrator]

Really sorry that you are not getting anywhere with your GP and glad that you didn't bother to listen to the nurses mis-information.

Yes, you can go private but it costs an arm and a leg - can be something around £100 per injection - hard to justify when an ampoule actually costs less than £1. Not sure where but I'd imagine BUPA and others could sort you out.

Alternatively, you can source good supplies on the internet - you can also source bad supplies - most common good sources for those based in europe are goldpharma and mycare.de.

In a lot of European countries injectible B12 is available over the counter so you are basically purchasing from a country that doesn't have the same silly restrictions as we do in the UK and using EU legislation that enables you to source medications you need if they aren't available in your country of residence - so not doing anything illegal.

You can inject either intramuscular - like the shots you have received - but you need to get someone to show you how to do this properly - or subcutaneously (using an insulin needle) - which is somewhat more straightforward though you don't quite get the same initial hit that you would intramuscular.

However, you may want to experiment with other formats before you go down that route eg sublingual tabs/sprays, nasal sprays, skin patches - different people have different experiences - nasal sprays work find for me. You might also want to experiment with the format and find which suits you best - I use a mix of hydroxo (for me best for neuropsychiatric) and methyl (best for my neurological).

Also a good idea to look at B9 supplementation.

[p101 in reply to Gambit62]

Thanks.

Have just ordered this to try before resorting to seeking injections elsewhere.

Solgar, Sublingual Methylcobalamin (Vitamin B12), 1000 mcg, 60 Nuggets

Any idea how many I should take each day? It's mostly neurological symptoms.

I am taking 5mg of folate each day - is that the b9 and is that ample? This was prescribed.

I'm struggling to eat cause my stomach is so sore. Just been tested for celiac's disease and h pilori infection - waiting on results. Should I still be able to absorb it taking the nuggets above? Sorry for 20 questions. I have no life at the moment due to severe symptoms. Having to be helped with my own children Gone from mega independent working mum. To house bound unable to drive, feel off balance standing, nerve issues and extreme fatigue!

[Gambit62 Administrator in reply to p101]

If you are being treated for folate (B9) then I don't think there is any need for further supplementation but if you are deficient in folate then it will be affecting how well you metabolise B12 so could be part of the problem.

Can't comment on the Nuggets as not something I have come across - the idea of the sublingual is that it is absorbed through membranes in mouth so stomach shouldn't be an issue for that.

Okay about the 20 questions - hope someone else can help more on that. Totally relate to being dead and unable to cope - that's how I was til May last year when I started treating myself - so really hope you find the levels and form that works best for you.

Some people find that methyl doesn't really do it for them with neuro sytmptoms so if you aren't finding a result may be worth trying another form.

B12 doesn't have any known undesireable effects so just try what dose feels right - experiment with upping if it doesn't seem to be doing the trick - I take about 3-4 mg of B12 a day.

[p101 in reply to Gambit62]

Is it worth me ordering the hydoxo nasal spray stuff as well and can you use both at the same time? (I don't really care about cost (within reason!) will try anything to get well!) x Appreciating the advice x

[Gambit62 Administrator in reply to p101]

Nothing to stop you and nothing to stop you taking different things at the same time except that you won't be able to tell which is the most suitable unless you are trying one thing at a time and seeing how that works - though you might want to start with trying everything and then cut things out to see if they make a difference or not as another strategy for finding what is most effective

[Jo55 in reply to p101]

I used to use the solgar sublinguals and although they helped, now use both types of the nasal drops - thanks to Gambit - and find they are much better.

[Frodo in reply to Jo55]

I know this has been answered before, but can't find the answer when I do a search - or in google - where do you get the nasal spray? Many thanks.

[Jo55 in reply to Frodo]

Your Health Basket. It's drops rather than a spray, little white bottle with a small red heart on it, the Uliv spray is unavailable.

[Frodo in reply to Jo55]

Thanks.

[Jo55 in reply to Frodo]

Hope it helps

[Erainy]

I'm sorry to hear your struggle and most of us have been there re: initial loading doses and need to have more than one quarterly. They won't give you more B12 injection you feel your body needs but doctors are more than ready to dish out anti-depressant at a mere mention of feeling anxiety, depressed mood or even pain and no test is required!! How ridiculous is that?! I think policy is that....just dish out anti-depressant anyway and it might work. lol While I know there are very good doctors like Dr Chandy, I don't have high opinion about doctors in general...can you tell? I formed my opinion through my experience unfortunately.

My suggestion is, to set yourself a goal to find the right GP and move surgery. Try all the surgeries (if you must) in your area one by one until you hit the good ones. Nowadays, you can register at any surgery outside of your catchment area.