Want to hear some good news?

[Cherylclaire]

I went to an ENT appointment yesterday -after waiting for over 7 months, I was a bit unsure about what to take (could no longer remember what had initiated GP's referral), so took some photos, diary and symptoms list, some research in a folder.

After talking and examining, going through photos, discussing symptoms list etc. the consultant said that all the symptoms that I had presented to him were B12-related. He told me to continue with my injections (every other day) and that I was doing absolutely the right thing. That I would improve over time......!!!!

He also said that I was correct in thinking that damaged, infected and malfunctioning saliva glands and ducts do have an impact on B12 metabolism*. He is now referring me back to the specialist department that deals with procedures to widen strictures to the salivary ducts (a procedure that I first had done in 2014).

He also complimented my GP on her detailed referral letter, and me on my notes and photos, saying that they were most helpful to him !

Wanted to kiss him !

* Haptocorrin/ R-binders in saliva envelop and protect B12 in food (extrinsic factor) from stomach acid.

[Shash23]

👍👍 keep. It up... Hws ur balance now??

[Shash23]

Plz visit my post.. Shed light.

[Cherylclaire Forum Support in reply to Shash23]

Shash23 , it has taken me nearly 3 years to get this far, and I'm certainly not yet back to "normal" but I now feel that this is not asking for the impossible. So I'm probably not capable of giving you any answers to your particular problems.

There are people here however that can help you start this process- but you will need to give them all the information you can eg: blood test results and ranges, what your symptoms are, who you have seen so far, what you eat and vitamins you take etc. Give them some facts, some details in your next post. Listing your symptoms can encourage a response from someone who identifies with your problems- even that is a relief and certainly makes you feel less lonely/ wierd.

Take it easy, take it one step at a time, don't lose heart and if you do, talk to someone. The people on here understand because they have been through (or are going through) the same or similar. Even the worst symptoms (or embarrassing ones) will be familiar to somebody else. My balance has never been bad, which I know is a huge problem to a lot of people here, but also a useful indicator to those who are improving.

This will take time and that is frightening when you feel so bad. I was most afraid that I was losing a me that I recognise, and that this was irreversible. Not saying this made it worse. Having someone "on your side" that you really trust helps, especially with consultant appointments.

[Foggyme Administrator]

Hi Cherylclaire. That's fantastic news. Leaping for joy on your behalf (in a B12 deficient lack of energy way 😉).

And how refereshingly wonderful (to,put it mildly) to hear of a Consultant (of any variety) who recognises the importance of every other day injections 😀.

I would have wanted to kiss him too.

It's been such a long haul for you so just delighted that all's now going in the right direction...and you're beginning to get Cherylclaire back. Hurrah 🙃🤗.

Keep sending updates...good news keeps us all going 👍

[Cherylclaire Forum Support in reply to Foggyme]

I know !!!

Seeing GP with the good news today, and hoping to discuss a phased return to work plan for January. If it works out, good. If not, then at least I tried and lost nothing in the attempt, since I'm no longer getting paid.

Keep leaping, lovely Foggyme . Sorry I can't join in, but I seem to have lost all my shock absorbers - and would end up going A over T and probably snapping something ! Leaping inside though. x

[clivealive Forum Support]

Thanks Cherylclaire and well done for all your preparation.

[Cherylclaire Forum Support in reply to clivealive]

Had a lot of help there, clivealive . Unbelieveable luck that I finally found a consultant who is aware that frequent B12 can slowly improve many long-term and varied symptoms, most surprising that it was in the ENT department !

[potter5]

That is really great news Cherylclare and so refreshing and encouraging. Great to find someone who understands and listens. Best wishes.

[Cherylclaire Forum Support in reply to potter5]

I don't think he realised how rare a treat it is just to be treated as a slightly intelligent adult.

[pitney]

Great news so pleased to hear you were listened to, gives us all hope for the future.

all best wishes

[Cherylclaire Forum Support in reply to pitney]

...stay hopeful, pitney . Will keep you updated.

[Sleepybunny]

Hi,

Great to hear about a consultant who recognises the value of patients doing their own research and knows about B12 deficiency.

I hadn't realised that malfunctioning salivary glands can have an impact on B12 levels. fascinating. B12 deficiency Info website and possibly PAS may be interested in that piece of info.

I wonder if that means people with Sjogren's syndrome are at risk of B12 deficiency.

patient.info/doctor/sjogren...

[Cherylclaire Forum Support in reply to Sleepybunny]

...and in such an unlikely corner, Sleepybunny !

I had a quick look at the link above and it seems quite likely, doesn't it ? I'll let you know if I find out anything.

If binding in order to protect B12 derived from food is the first step on a very long and complex journey, you would think that this area would have been explored more thoroughly, as it is more accessible and therefore less expensive/ invasive.

Certainly, any small intestinal problems are difficult to diagnose because of inaccessibility and apparently, I was very lucky to get the SIBO breath test procedure on the NHS.

As for one carbon metabolism genetics testing in May, I've now got results:

" ..results...have not revealed any clearly pathogenic variants in the panel of genes tested that are known to be associated with megaloblastic anaemia."

Perhaps my GP has more detail than this - I assumed that I was being tested because of having a previous diagnosis of functional deficiency . I am seeing her today and will let you know if I find out anything more.

[Foggyme Administrator in reply to Sleepybunny]

Good point about the Sjogren's Sleepybunny . I go for Sjogren's biopsy results tomorrow so...interesting. Will,have to read more about it 😉.

[Cherylclaire Forum Support]

It's a big start, Hidden , and a massive relief. Now waiting for gastroenterology and metabolics appointments.

[Still fairly rubbish at injections, but promising results despite ineptitude]

[Cherylclaire Forum Support]

Sleepybunny , googled "Sjoren's syndrome and B12" just now and the answer is that there is a link. Have printed off a research article by E. Andres, whose name I recognise as being associated with other useful B12 research, and will read what the link actually is, beyond that of being an autoimmune condition like PA (and so would be linked for that reason alone).