Update: B12 Toxicity (Ha)...B12 Not W... - Pernicious Anaemi...

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Update: B12 Toxicity (Ha)...B12 Not Working...Diagnostic Busses Rolling In...Treatment Has Commenced...and a Big Thank You.

Foggyme profile image
FoggymeAdministrator
26 Replies

Hi All.

A quick recap on where I was when I first joined...severely ill with gastric problems, 2 stone weight loss, unable to eat at all for 4 weeks, symptoms of B12 deficiency returning with a vengeance (including neuro symptoms), asked for more frequent B12 injections (which I should have been on in the first place), but very hostile GP stopped all injections due to B12 toxicity (don't worry, I now know this was a nonsense) 😀.

So..I arrived here...started reading and learning...and pushing GP's / consultants to do what should have been done...oh, many years ago...

And here's where I'm at now...staring with B12 ('cause many asked for updates about the possibility that B12 had stopped working)...

After multiple quite hostile appointments and much evidence waving with GP, I'm now on an eight weekly regime of injections - which I supplement with self-injections (currently every other day but will stretch out when other treatment kicks-in). MMA and homocysteine normal so not thought to be any element of functional B12 deficiency.

I've been doing all the 'ologies' and am just coming out the other end (feel a bit like I've been minced through a sausage machine 😖).

With the exception of the gastroenterologist who only looked for bleeding issues, couldn't account for the B12 deficency, low ferritin, low vitamin D (and had never heard of anti-body negative PA), the others have been excellent (though it's been very slow waiting for appointments, tests and follow-ups 😖). No,surprises there, I think.

So...ferritin / vitamin D rising nicely (on supplements), heliobactor finally eradicated, no large fibre neuropathy, demyelination, or sub-acute degeneration of the spinal cord. Hurrah 😀.

Diagnostic Bus: duodenitis, gastritis, multiple duodenal ulcers, achlorhydria, gastric paresis, intercostal neuralgia, disc herniations at cerviacl 4 - 6, frozen right shoulder....and...the autoimmune condition that underpins it all...undifferentiated connection tissue disease (UCTD)...I may or may not have markers for other autoimmune conditions (i.e. Lupus, sjogren's etc)...so more testing and scanning going on. Think the strongly positive ANA (1:1600 homogenous patterned) gave the game away.

Apparently, 20% of people with this condition go into remission or have good symptom control and 80% go on to have markers for other autoimmune conditions...so waiting to see where this goes.

But here's the best bit..they started me on treatment immediately (no endless waiting for more results and follow ups 😀). So I have a titrate dose of steroids for three weeks and have also started on immunosuppressants (which will probably take up to twelve weeks to kick-in).

The prospect of beginning to feel well is a strange and wonderous thing 😀😀. And even better, they're going to continue to treat me.

At the moment I'm not so good...still in dozy, foggy, sleepy hurting mode (a flare, I'm told)...but hopefully not for much longer. Taking sauerkraut and lime juice for gastric relief (may try symprove - perhaps I'll get some for Christmas 😄). Still have multiple symptoms but I'm pretty sure that these have their roots in the autoimmune 'thingy', rather than being a B12 issue (time and treatment will better enable me to sort out what's due to what).

So I really want to say a big thank you to all here: for the information, knowledge, advice and support...and the laughs too...well...for everything.

Pay back...not sure how possible that is, but I'll certainly try (and be trying, too) 👍

I arrived as a wreck...and I'm still a wreck! But hopefully not for much longer 😀.

So thank you, my lovely wonderful stranger friends 😀😀

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Foggyme
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26 Replies
Hillwoman profile image
Hillwoman

Very glad to hear your admirable persistence has resulted a clearer medical picture, though obviously sad to learn of the scale of the autoimmune problems. I hope you are happy with the type of treatment proposed, and that it all goes well for you.

All the best. xx

Foggyme profile image
FoggymeAdministrator in reply toHillwoman

Thanks Hillwoman. Much appreciated...I feel more reading coming on...and don't think I'll ever entirely trust doctors again..yay for the information super highway 😀 xx

deniseinmilden profile image
deniseinmilden

Hi!

Thank YOU for all your help and support too - despite the struggle you are going through! You - and many others - have done so much to keep me, and I'm sure many others, going!

Good on you for trying so hard and wishing you all the very best for more improvement very soon!

Denise x x

Foggyme profile image
FoggymeAdministrator

Ah thanks Denise...with bulls on 😀.

It's so good that we can all do it for each other.

What jolly good eggs we are 👍

Withattitude profile image
Withattitude

So glad you have a diagnosis and I hope with all my heart that you start to feel much better very soon. Which consultant managed to sort you out in the end? Hoping you will soon be enjoying life and running round with your lovely grandchild. Thank you for setting an example of determination and keeping going. I hope I get answers too. Jx

Foggyme profile image
FoggymeAdministrator in reply toWithattitude

Hi Withattitude...and thank you very much. It was the rheumatologist...marvellous...she actually read my symptom list (very long 😖) and the medical history I gave her (also very long 😖). I still can't believe that I came away with....treatment 😄😃😅.

Early days but very much a step in the right direction.

And I hope you get some answers too...it just takes such a long time and so much energy...I'm keeping everything crossed for...will be in touch.

Take very good care Withattitude the Brave 😀 xx

Gambit62 profile image
Gambit62Administrator

Long may it continue

Foggyme profile image
FoggymeAdministrator in reply toGambit62

Thanks Gambit62...much appreciated...I second that 🙃😀

clivealive profile image
clivealiveForum Support

It only took 13 years between gastric surgery and eventual P.A. diagnosis for me Foggyme so carry on with your " everything crossed " - except that will make typing your very helpful comments a bit difficult :)

I wish you the very best

Foggyme profile image
FoggymeAdministrator in reply toclivealive

Good grief clivealive...that was quick....and lol...I do love difficult 😉😉😀

Best back at you 👍

Raven321 profile image
Raven321

Soo glad, things are finally working out for you! Well done for having the patience to endure all you have foggyme. Things.. can only get bettter 😊👍

Foggyme profile image
FoggymeAdministrator in reply toRaven321

Thanks Raven321. Ever hopeful 👍

Sleepybunny profile image
Sleepybunny

Great that you are on the road to feeling better and comforting to hear that there are consultants out there who take a real interest in complex cases and look at symptoms as well as test results.

Foggyme profile image
FoggymeAdministrator in reply toSleepybunny

Thanks Sleepybunny. It's amazing what an hour with the right consultant can do...much relieved pinching going on - can't quite believe it...at long last 😀

SweetorDry profile image
SweetorDry

Safe journey on your road to recovery.

Foggyme profile image
FoggymeAdministrator in reply toSweetorDry

Thanks SweetorDry...it's been a twisty uphill haul..looking forward to speeding in the right direction 👍

Ruthi profile image
Ruthi

So you don't have ME, CFS or Fibro? You have UCTD?

Foggyme profile image
FoggymeAdministrator in reply toRuthi

Indeed I don't...diagnosis plucked from thin air over the years by GP - without even the most cursory examination 😖.

Definately UCTD - with treatment - hurrah 😀

Ruthi profile image
Ruthi in reply toFoggyme

See? That is what annoys me about these syndrome diagnoses. Its the lazy doctor's standby.

Onward and upward now, eh?

Foggyme profile image
FoggymeAdministrator in reply toRuthi

Couldn't agree more Ruthi...onwards and upwards indeed 😀

AngelaJG profile image
AngelaJG

Well Done Foggyme, glad things are moving in the right direction for you.

You are a very inspiring and knowledgeable person (I guess that is what happens when we are on the road of trying to look after our own health), and love reading you posts giving advice and encouragement to all of us that are starting down that road,

wishing you well

:)

Foggyme profile image
FoggymeAdministrator in reply toAngelaJG

Ah thanks AngelaG. Guess we're all on the same road and it's really good to be able to try and 'payback' after all the help I've had.

And there are so many knowledgable folks...always something new to learn....yipee 😀

pugdogs10 profile image
pugdogs10

Its great that you have managed to stay so positive after such a horrendous journey through the mincing machine, I m so glad that you seem to be getting some answers AT LAST!

Love and best wishesxx.

Foggyme profile image
FoggymeAdministrator in reply topugdogs10

Thanks pugdogs10. Much appreciated...just so wish that the mincing machine wasn't so hungry...all our lovely members deserve so much better 👍.

But...I'm a happy sausage 😀

expatkerry profile image
expatkerry

so glad You got your diagnosis. Best wishes xxx

Foggyme profile image
FoggymeAdministrator in reply toexpatkerry

Thanks Expatkerry 👍

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