Usual diagnosis problems

[frogmore]

Hello all, first post, but been reading for a while.

I seem to be in the usual position, I think I have B12 deficiency but my doctors think otherwise.

My initial bloods gave a B12 of 320, but I was taking supplements at the time, and although this falls in the indeterminate zone the GP says I do not have low B12. I've been waiting for an appointment with neurophysiology for over 20 weeks, but at 18 weeks I found out that they don't have anybody in post for me to see. I had an MRI in April all clear, now have to wait for another 3 weeks for another MRI of my lower spine.

So in the 5 months since I first saw GP and said I thought I had PA my symptoms are getting worse, the GP is sticking to the usual mantra your not anaemic and you don't have B12 deficiency. So I am thinking of self injecting to halt my decline. Need help finding German supplies as all the old posts seem to be 3 or 4 years old.

Hope somebody can help. Regards

[Wheat]

hello, so sorry you are having problems with your gps. I self inject to get the treatment I need.

I use versandapo.de or juvalis.de. Both good and reliable. Part of same group according to paypal/ my credit card. Remember to keep order under £135.00 so Customs Duty is not incurred.

Best wishes, x

[frogmore in reply to Wheat]

Thanks Wheat

[Sleepybunny]

Hi Frogmore,

Welcome to the forum,

Many UK forum members here end up resorting to treating themselves if NHS treatment is not enough or worse they receive no treatment at all.

Might be worth one more go at trying to get treatment from GP.

Have you thought about joining PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

You do not need a confirmed PA diagnosis to join.

PAS members can access a helpline.

pernicious-anaemia-society....

There are PAS support groups in UK. Some meet online. Good places to swap info.

Scroll down page in link below to find next meeting.

My understanding is that you can attend a PAS support group meeting without being a PAS member but check this with support group co-ordinator.

pernicious-anaemia-society....

There's lots of useful PAS leaflets on website.

pernicious-anaemia-society....

For example there's one " Helpsheet for Patient-GP Discussion" which might be useful to read before talking to GP.

Have you considered putting your concerns into a letter to GP?

I think this makes it harder for GP to ignore. Always keep copies. Paper trail useful if there is a need for a formal complaint in future.

You could list evidence that suggests PA eg blood test results, family medical history, symptoms list, extracts from UK B12 documents

How to write letters to GP about B12 deficiency

b12info.com/writing-to-your...

I left detailed replies on these threads with useful info for those struggling to get treatment in UK.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Thread about Patient Safety

healthunlocked.com/pasoc/po...

I used to write very detailed replies but have nerve problems that affect typing so have to stick to shorter replies these days.

I'm not medically trained just someone who struggled for years from unrecognised and untreated B12 deficiency....I had to resort to treating myself.

[frogmore in reply to Sleepybunny]

Thanks Sleepbunny, already a member of PAS, had about enough of GPs

[Sleepybunny in reply to frogmore]

I empathise...I was left for years without treatment.

[Cornwaller]

Search for Wedgewood on this site. Her advice is wonderful and detailed.

[donnabrain]

There's a Facebook group called B12 wake up that has information on where yo source supplies for self injecting, plus taking nessescary co factors etc

[frogmore in reply to donnabrain]

Thanks all, supplies on the way, then we'll see

[Mixteca]

Before you start injections, especially if you have neurological symptoms, I'd push for tests that could conform PA - active B12 (you can get this done privately), Intrinsic Factor antibody & parietal cell antibody tests, homocysteine, MMA - blood or urinary. This is your best opportunity to get a positive test result - it'll be much harder once treatment starts.

Also, have your 1st jab in a clinical setting in case of a (very rare) adverse reaction. Some pharmacies will do this privately. Good luck!

[frogmore in reply to Mixteca]

Thanks Mixteca, finally had a neurophysiology appointment today, nerves in my lower back legs just about shot, he had the machine at full power to get a response, just had more bloods but I think the answer from GP will be the same.

[Mixteca in reply to frogmore]

You're probably right. If I could go back in time I'd have done those tests privately, I did ask but they did some of them many months after I'd started treatment. A golden opportunity wasted.

[frogmore in reply to Mixteca]

Yes I can see your point but I'm banging my head against a brick wall and I need to stop the deterioration in my nervous system.