Post Neurolgist Appt & What Next!!

[Sallybones]

Part of my answer to Sirlam plus a bit more.

My neurologist nice man that he is also has little knowledge of B12 deficiency but I explained I had to see him again to satisfy my GP and move me on again to another step. He said he is satisfied i do not have a neurological disease, which is ok by me, but doesn't dismiss the neuro symptoms. I've had brain scan and lumbar puncture in the past and they were clear. I said I had asked to be referred to a Haematologist, which he also thought was the way to go. So in his reply to my GP I asked if he would recommend that she would follow the B12 / Haematologist route, which he agreed to do. So all not lost, just another summer / year going by. He is quite empathetic for me. Meanwhile I have got a referral to see an Endocrinologist in June.

The neurologist also asked me what I thought of the Fibromyalgia diagnosis. I said I believe it is a collection of symptoms and part of a bigger picture that is going on in my body. And I said it depends who you talk to about it and everybody will tell you different. Each physio has their own take on it and some definitely say it's what they say you've got when they don't really know what you've got!!!

I've also realised this week how disjointed, disconnected and uninformed our NHS and related departments and GP practices are. I can also include local pharmacists in that little rant.

Onwards and upwards tho. So I'm gathering self injection info but still can't get my head around needle / syringe sizes and ampule amounts. mls defeat me as I'm of the pre decimal metric era. Youtube have one or two English injection videos to watch again but I'm sooooo tired and frustrated so that's for another day. Thank you all as otherwise I feel very alone in trying to get good health back.

[fbirder]

Glad the NHS is getting you sorted, albeit slowly.

Here's where I get my stuff for self-injection...

I get my B12 from versandapo.de versandapo.de/article/searc...

I get my syringes, needles and wipes from amazon.uk:

Green needles to draw the solution up into the syringe - amazon.co.uk/Sterile-Single...

Blue needles for the actual injection - amazon.co.uk/Sterile-Single...

2ml syringes - amazon.co.uk/2ML-PLASTIPAK-...

Needle sizes are listed in imperial and metric (imperial has width measured in 'guage' smaller numbers are narrower).

As for volumes - 1 ml used to be called 1 cc (cubic centimeter) and is a bit less than a sugar cube in volume.

B12 comes in two volumes - 1 ml and 2 ml - most people prefer 1 ml. The standard amount is 1000 micrograms (μg, ug or mcg) which is the same as 1 milligram (mg) or one-hundredth of a grain in old money (or 30 millionths of an oz)

[Sallybones in reply to fbirder]

thanks fbirder, you're a star. As I would just be starting to inject, how many ml or micrograms per alternate day should I try? Bear in my mind my blood test showed serum level 180.

I will print this off and re-read it so it sinks in!!!

Oh and do you get hydroxy / cycocobalamin or methyl from versandapo?

[fbirder in reply to Sallybones]

Have you tried asking your GP for injections? That way you can tell he nurse you're thinking of self-injecting. A good nurse will walk you through the whole process.

They will give you hydroxocobalamin (which is definitely the best to start off with as the vast majority of the population can easily convert it to the active forms). The injection will come in a glass ampoule containing 1000 ug dissolved in 1 ml of water (with some sodium chloride and acetic acid - salt and vinegar - to keep the acidity right).

[Sallybones in reply to fbirder]

Hya thanks again for your helpful reply. I'm working on my GP but she now wants me to see Endocrinologist (appointment in June) first. She admits she has little knowledge and understanding of B12 even after reading the PAS info and new guidelines I left with her, which she said she read!! I did think she would consult with her practice colleagues but apparently not. I'll go along with her because she has been quite supportive over the last 12 years. However I'm getting prepared for a negative response and even if she will give me injections eventually I've a feeling I will meet the difficulties that others have found re regularity. So I thought I will buy all the 'stuff' in and if referrals drag on I will start injecting myself anyway.

Thank you so much for your patience with my slow brain.

[Hidden in reply to Sallybones]

Thinking ahead. Best to be prepared. Good luck.

[fbirder in reply to Sallybones]

Yup, she sounds like a good GP overall and worth sticking with. She just might need a little educating.

I gave my GP a, signed, copy of Martyn Hooper's book. He read it in a week and it's now doing the rounds of the rest of the practice. I think he felt more obliged to read that than the rest of the stuff I gave him.

[Sallybones in reply to fbirder]

good idea fbirder

[clivealive Forum Support in reply to fbirder]

"with some sodium chloride and acetic acid - salt and vinegar -" What! No pepper and HP Sauce fbirder ?

[Foggyme Administrator]

Hi Sallybones. Just wanted to say really pleased that your neuro is trying to help you, albeit though not well informed. Agree about the disjointed nature of NHS system. Sure we'd all do a lot better if the system was joined up and we were treated as a whole body, rather than a collection of systems!

Also wanted to say I know what you mean about feeling very alone in trying to get well. This is a very 'alone', nasty insidious disease and, like you, if I hadn't found this space, I don't know what I'd have done. Just more lost life, I guess.

Don't worry about self injecting. Once you get going, you won't look back. I know it probably sounds silly, but try practicing by injecting an orange with water. Will help you get the feel of it and give you a bit of confidence.

Good luck and take care. Let us know how you get on x

[Sallybones in reply to Foggyme]

Hi Foggyme thank you for your reply it's a great comfort and I can go off to bed feeling a bit better.

I will certainly report back on future progress. xx

[Hidden in reply to Sallybones]

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