a puzzle

[jillc39]

I have had PA diagnosed and I have bad neurological pain in feet and legs. (My struggle with frequency of b12 injections is another matter). my gp prescribed a high dose of pregaberlin for the pain and it is helping a lot - but I read here that neuropathy should be treated by frequent b12 injections. what to do??? please??

[fbirder]

The most likely underlying cause of the neuropathy is a B12 deficiency that needs to be treated with injections every 8 weeks according to the NHS and more often according to many people.

The pain caused by the neuropathy can be alleviated by certain drugs, Pregabalin being one of them.

[jillc39 in reply to fbirder]

thank you for that speedy reply

[wedgewood]

Isn't it strange that doctors are happy to prescribe drugs which have possible side effects, but not prescribe extra harmless B12 injections? One hears of this time and again! You can only press for more frequent injections. Failing that, self-inject. You will get all the help you need about that from this site. Best wishes to you.

[deniseinmilden]

I can only suggest self injecting.

It costs about £1 per dose, including the syringes and needles, is much easier than the thought of it and gives you control over your destiny so you aren't at the mercy of ignorant, unhelpful medics.

You will also need to take the cofactors needed to metabolise the B12: a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium.

Once you get all these at the rate your body needs you will improve more and more.

For more information on sourcing supplies you could look up my profile and see my post "My Experiences".

[scorpiojo]

I can say after self injecting yesterday for the 1st time it's NO different to what happens at the GPs... You have that second when it goes in... That's all.. In our heads we think it's going to be drawn out agony, but it's not... I am going to do this now as I don't feel I want the argy bargy with the GP or enter their waiting room free of germs to possibly leave with some! Thank god for here...

[clivealive Forum Support]

Hi jillc39 you have my sympathy and empathy.

I've had P.A. for 45 years and for the last six years have "struggled" to get more frequent injections due the the recurrence of neurological symptoms in the run up to the next scheduled one.

My previous GP reluctantly agreed to my having an occasional early injection, when I felt the need. Unfortunately that wasn't enough and I changed doctors

Well - this morning I finally got permission from my new doctor to increase the frequency of my cyanocobalamin B12 injections from the previous regime of four weeks to every three weeks.

So that means one more GP has been persuaded to listen to and treat the patient according to his symptoms rather than applying the "one size fits all" syndrome that so many doctors adhere to.

Others on this community advocate self supplementation, but personally I think that should be only as a "second resort" (if there is such a phrase) as it means their doctor is not being "educated" in how to deal with B12D and P.A. patients and their symptoms especially when (unreliable) test results are "within range".

List your symptoms and arm yourself with as much information you can glean from this community and bang your doctor over the head with it.

I wish you well

[ndodge in reply to clivealive]

Congratulations, clivealive, on your success with the more frequent injections. Well done!

Sorry to take a detour with your post, jillc39.

[scorpiojo in reply to clivealive]

I think most of us are so unwell we can't get enough energy up to fight... It's very stressful... I have to say, if we couldn't buy supplies this picture may be very different with many never recovering or getting to press for change..

Also, trust me, when I am feeling well again I will present my GP with the books and by receipts and ask is that why he joined medicine, to see people scrabble about ill self injecting!! I'm sure it will come down to money too many on the books etc etc...

Good luck and well done with getting what you need x

[jillc39]

yea! love it!

[sweetnessandlight]

I also have severe neuropathic pain, burning, twitching etc. My neurologist has prescribed gaberpentin which is similar to pregaberlin but has so far refused to accept that inadequate b12 therapy has caused my symptoms. In my experience you need both regular b12 shots and your pregaberlin, especially if it is working for you. Treating with b12 can be a very long road and you need to be able to function in the meantime. I self inject every other day which is the treatment I believe I should be getting from the nhs in the hope that I will eventually get better.

[fbirder in reply to sweetnessandlight]

I self inject every other day which is the treatment I believe I should be getting from the nhs

It's 'every other day - until there is no further improvement'. Are your symptoms still improving?

[sweetnessandlight in reply to fbirder]

Now then fbirder, that is my dilemma. How do you know that symptoms are not going to improve further?

[fbirder in reply to sweetnessandlight]

When they stop improving then 'there is no further improvement'.

[clivealive Forum Support]

Hidden I was "speaking" metaphorically and I am by no means being critical of any who through absolute necessity self medicate although I do remember being "laughed at" by a previous doctor for my neuropathy which apparently was "all in my head"

[clivealive Forum Support]

Therefore take two sticks - (three times a day after meals).

Seriously I do feel for you Hidden and hope you can make progress soon without resorting to GBH.

[jillc39]

thank you sweetnessandlight - sticking with the pregaberlin (had gaberpentin befor) and now self injecting. going to try every other day - I hate to do it because I feel it lets the gp off the hook.