G.p call

[Nackapan]

Well as most know I tried to get Subcutaneous b12 I injections on prescription to do at home inbetween IM at the surgery.

Since have got my own supplies as want to try a different frequency.It would have to be prescribed 'off licence ' so neurologist wrote . One G.p blocked it.

Now my G.p has just told me she is prescribing b12 to inject subcutaneously. Not heard back from CCG but shes read up on it.

As long I take responsibility incase of bruising ect .

So hopefully that is it now. Pleased as I wanted transparency. If it works out I will have fewer and fewer at the surgery IM .

[cocoa]

Well done for fighting your corner.

Will you tell them that you also have your own supplies?

[Nackapan in reply to cocoa]

No lol

[Nackapan in reply to Nackapan]

I'm having b12 2 weekly from the surgery. At present I'm trying every 10 days . I tried 3 weekly and that didnt work so gone the other way.

My Gp already had stated no more than 2 weekly also that if she prescribed b12 to do at home I might be tempted to do more!

I think it very unwise at this stage to say anything as ive only done 2 I've bought. The other reason I bought it was for security incase they were suddenly stopped like so many have for others.

I've had a long struggle with my surgery and dont want to 'rock the boat'

[Foggyme Administrator in reply to Nackapan]

Well done for persevering Nackapan.

Think that's a very wise approach given the struggles you've had...but unfortunate that it’s necessary!

And great that you’re managing to educate your GP...hopefully for the benefit of others too 👏👏.

But oh...why does it have to be so difficult!

x

[Hidden]

Well done Nackapan x

[Nackapan in reply to Hidden]

Thanks

[pitney]

well done

[Nackapan in reply to pitney]

Yes less trips to the surgery will be good. Goodness . I asked about this and it was agreed in principle in early February.

Have yet to actually get the prescription!

So hopefully if others keep pushing it can happen.

[Showgem]

Well done!

[Nackapan in reply to Showgem]

Thanks . Now im hoping to move forward a bit.

[Showgem in reply to Nackapan]

It's not good that we have to spend so much effort trying to educate our doctors, but it's something that we need to try to do.

With some positivity at last from your surgery I hope things improve for you x

[Miss-guineapig]

That's good news Nackpan. I self inject inbetween but haven't told my GP, I don't want the fuss of it all. X

[Nackapan in reply to Miss-guineapig]

Against all my instincts.

But 'honesty isnt always the best policy.

At the end of the day we are buying a vitamin for our health ' at the frequency we hope can give us some life back.

I'm just pleased on my notes sc and IM and a breakthrough to doctors to actually listen and learn

We all never stop learning

[Sleepybunny]

Hi,

That's great that your GP has prescribed sub cut B12.

Gps are allowed to prescribe off licence if it is their clinical judgement that it is in the patient's best interest.

GMC link about when GPs can prescribe off licence.

gmc-uk.org/ethical-guidance...

[Nackapan]

Yes it was like 'pulling teeth.

Will believe it when I collect it from pharmacy.

[Hidden]

So pleased for you ♥️

[Nackapan in reply to Hidden]

Thanks. Safer for surgery and me too in the current climate

[Hidden in reply to Nackapan]

Yes, a real win.

[Cherylclaire Forum Support]

Finally, Nackapan , an opportunity to make some progress !

Good that you are being listened to. What a struggle though.

Let's hope you see improvement soon.

How's the toothache ?

[Nackapan in reply to Cherylclaire]

To clarify I meant less stressful when having own b12 supplies and more control with frequency.

I. Personally pleased on my notes I need frequent b12 injections .

I know this has back fired for you and many which is inexcusable .

It really shouldn't have tk be thus difficult.

I'm hoping it at least raises awareness of PA in this pandemic .

This stopping of peoples treatment I find upsetting. Can only urge everyone to push if they can . I realise takes alot of energy. I personally these days find it easier to write.

[Nackapan in reply to Cherylclaire]

Next replies in wrong order now . Got myself in a real muddle 🤣

Sure everyone can decipher...

[Nackapan]

Yes hopefully my new regime will give some progress. Really need to function alot more. Dont mind a 6-8pm bedtime if I've managed an okayish day.

Less head pain gives more balance issues. That should be telling to the right specialist.

Tooth less painful thanks. Eating can set it off . Interesting food !

So far so good keeping it clean for when I can get dental treatment.

If it happens to anyone sensodyne or similar toothpastes really good for numbing nerves exposed. Also warm salty water and warm mouthwash a saviour.

Also if you put your tounge to the roof of your mouth it relaxes your jaw

I've learnt that with head pain /skull aches ect.

Shame on painkillers again as was managing with alot fewer .Hey ho.

It's so less stressful knowing you have more control with treatment and different options.

Hope you and everyone can make the most of the BH w/e and are able to relax.

[Cherylclaire Forum Support in reply to Nackapan]

Yes, a lovely sunny day in the garden.

Had workman round to do some emergency work and had to tell him to talk to partner as concentration, cognition and memory not too good when there's a lot going on and a lot of important technical stuff to remember. Still don't like having to say it. Pride.

But work got done, and gardening got done. Had a couple of glasses of wine sitting on the bench watching and listening to robins, wrens, blue tits and my absolute favourites, swifts !

So mostly wonderful.

And, like you said, it is within my control if not.

Must be past your bedtime, Nackapan - talk to you again soon, my friend.

[Nackapan in reply to Cherylclaire]

Yes it was lol.

Sounds a relaxing day.

Good

[scnuke]

Good for you Nackapan! Physicians can often be intimidating and become highly offended when challenged, but you have to stand up for yourself. I know NHS is very different from the horrible system in the USA, but in the end, you still pay their salary. They work for you and they need to have their feet held to the fire occasionally.

[Nackapan]

Yes I agree. Thank you

[Litatamon]

How wonderful to hear Nackapan. You should be very proud of yourself for all your persistence. Hoping that it makes a huge difference for you and that your dedication to push for the change impacts other patients as well.

[Nackapan in reply to Litatamon]

Thanks.

I hope it does too. Help move me forward and helps others in the future.

My Gp was quite sharp with me in February . Saying I wasnt getting better as not taking tablets .

Anti depressants or anti seizure ect the list is endless.

Also had the discussion about sc at home inbetween IM.

She at that stage agreed to sc but at the surgery. Another Gp blocked it.

Upset me at the time and dud start to wonder if I should trial another drug.

But what ti choose .????

Then decided to buy b12. Just having it in makes me feel more settled and more in control.

So trying every 1o days. Tried weekly and got too symptomatic and I'll

Have been on 2 weekly for a year.

So IM ar the surgery then sc (prescription) and one more my own. Like tiuve said . DIY.

Just hoping this regime brings results. As in lockdown cant change much re activity to see if I can cope with a little travel.

Hope you are still improving.

As I remember I got a diagnosis a year before you with a similar reading.

Lighter evenings much easier for me as light sensitivity persists . Hope that goes or improves by the winter!

T C

[Litatamon in reply to Nackapan]

"So trying every 1o days. Tried weekly and got too symptomatic."

What happened Nackapan? What were the symptoms that came with the frequency?

--------

Sad to hear Mr. light sensitivity has not disappeared. Yet!!

Such an awful symptom. People have no clue how painful and frustrating that can be. Here's to it dissipating soon.

[Nackapan in reply to Litatamon]

It was like going backwards. On the weekly trial. More headaches ,nausea. Balance off. I could go on. But awful.

More settled af present. Head feels like it's in a vice still but I'm hoping slow improvements remain.

Yes. Light sensitivity was getting me down by the end of winter as I probably tried too many times to have a light on to stay up beyond 5.

I'm missing reading a book and tv too.

There are things I can do more easily like walking round the block. Cooking .

I k ow small improvements az I'm getting frustrated and wanting to do a little more. Or something different.

Take care

[Ms_J]

Brilliant news Nackapan !

[Nackapan]

Yes.Thanks. Let's hope improvements continue with a more flexible regime