Cherylclaire with good news!

[Cherylclaire]

The good news is this: my MMA blood results came back as high, confirming B12 deficiency - despite B12 blood test, taken at the same time, reading over 2000. My Dr. has had me on 2nd lot of loading injections (6 over 2 weeks) while waiting for results, which will now be continued until no further improvements then 1 EVERY MONTH! She also noticed visible improvement, does not need to see me again and will let me decide when to stop loading and start monthly injections- as you can imagine, this delighted me and my partner, ....and my doctor! Improvements did not even start until after the 5th injection (of 6) so don't get disheartened. Also, things are looking up with dental work: bone infection after removal of tooth has finally cleared up and stitches removed! I think this is also due to B12 loading as it disappeared suddenly. Don't give up, people !

[fbirder]

Wow! Excellent news!

[Chocolate41]

Wow Cheryl I wish I had such an updated Dr.x

[clivealive Forum Support]

That's wonderful news Cherylclaire you'd better not let on where your doctor's surgery is else there'd be a queue a mile long.....

[Foggyme Administrator]

Brilliant news Cherylclaire. And a very big gold star to your GP - not something we get to say very often...so I really enjoyed that sentence 😀.

Hope your health continues to improve.

Take care x

[Marz]

Great news for you

Regarding your teeth/bone issues - it did make me think of your VitD levels. Low levels can be linked to all sorts of inflammatory situations and are often linked to low B12. Again it is another test that you have to push for with your GP.

Private testing for under 30 GBP's with City Assays in Birmingham - sent to your home.

Winter is on it's way .....

[Cherylclaire Forum Support in reply to Marz]

Had vitamin D checked as well and is normal.

I am very lucky that my GP is a very good one, but even she did not seem to know that my varied symptoms had a link, so it took quite a while for her to stop suggesting that I had IBS and depression- yes I went along with the Dietician and did the Fodmap diet just to show willing, but drew a clear line about not taking Amytriptyline.

Where she has proved outstanding to me is in her willingness to listen, observe and persist with investigative routes, which luckily included MMA serum test, despite already being on a B12 injection programme: result was high: over range at 351, which it clearly should not have been. She has altered my programme accordingly, and had to speak to nurses and receptionists to ensure new regime followed, as unusual -and slightly inconvenient when it's Flu-jab season!

Thanks for the advice, Marz. Nice to know I only need to go to the library computer and there is such a wealth of personal support. It has taken me 22 months to get this far. Onward and upward!

[Jose651]

That is just class news Cherylclaire,

I'm delighted that you have got you bone infection sorted. It is so important.

I've just arrived back, an hour ago, from my last trip to Budapest, Thank God.

I lost all my lovely teeth to undiagnosed B12 def/PA and Vit D def. I had no infections, just bone loss and the majority of my teeth were shakey.

So I decided, rather than loose 3 teeth this year and 4 next year, and end up with dentures😷 to go for implants before it was too late for implants to be effective.

It was a hard road at times, but thankfully I'm out the other end with a full set of fixed porcelain crowns. I'm a happy bunny tonight and just wanted to share it with my friends on PAS.

J🍀

[Cherylclaire Forum Support in reply to Jose651]

Glad you are a happy bunny- you are a brave one, too. Love from Gappybunny!

P.S. Enough about teeth - tell us about Budapest!

[Jose651 in reply to Cherylclaire]

Thanks Cherylclaire,

Budapest....I did not see any of that Fabulous City as the Dental Clinic is 2 hours from the Airport.

The town I stayed in was lovely and the Hungarian people very civil individuals.

I would go back for a visit anytime👏.

J 🍀

[ndodge]

Congratulations, Cherylclaire! That is a remarkable uplifting story! Wish all GPs were as enlightened as yours.

[Mandlou]

Did you have that test on the nhs? Congrats good for you ! 🙂

[Jo5454]

How lovely to read such good news! That is brilliant! So good to read your infection has gone too.

Also very interesting to read MMA can still be high when b12 level is high. I was given an MMA test after paying for an active b12 at ST Thomas, and MMA was high so was diagnosed with a functional deficiency. I was advised the MMA would most likely lower once on injections, but you are proof that it doesn't and that more regular injections are needed for some people. Can I ask how often you were having the injections before and did you have the MMA test just after one, or when another was due please?

My dr refused to do an MMA before ( told me I wasn't Ill enough!) but has advised I pay and do another soon to check how things are. I'm worried that if the mma has gone down he'll reduce frequency of injections, which I'm lucky are once monthly at the mo, but are really only improving things for a fortnight or so at the mo. Keep hoping it'll improve with time!

Always lovely to read some positive news, wishing you well....

[Cherylclaire Forum Support in reply to Jo5454]

Hi Jo5454-

Have looked in my diary today -after replying yesterday-

My first loading set of 6 was over a period of 1 month (Feb-Mar), then afterwards the first 'normal' one on 6th June, then a second on 23rd Aug, which seemed to do nothing at all. On 6th October, I had blood tests which included MMA and an injection which was the first of a new set of 6 loading injections. Did not even start to feel any better until after the 5th one. My MMA level (I think) came back at 315 nmol.

Still not perfect, Jo5454, but then who is?

[Cherylclaire Forum Support in reply to Jo5454]

Hi Jo5454-

and just to demonstrate my imperfections...... my MMA was high at 351 nmol (not 315 as I said in last reply).

Just had an injection this morning that has obviously not kicked in yet! Nurse said "You're the patient having reloads" -so very unusual perhaps to have B12 reprogrammed, even in a very good practice.

[Jo5454 in reply to Cherylclaire]

Thanks for both of you replies...and your info. It's so frustrating and such a let down they won't listen to symptoms isn't it. I had to have a blood test yesterday as I've had 4 lots of tabs for an infection but the dr also suggested checking b12 levels. I've already been trying to explAin to the nurses that it was high last time because of loading dose and will no doubt be high because of injections but that it's apparently a functional deficiency, so doesn't mean I'm necessarily absorbing it well...so I await with baited breath as to what they'll say this time. I had a loaded dose of 6, st Thomas rec more, but dr said I'd have to be an alcoholic to receive anymore!? But he has allowed them monthly which I'm extremely grateful for, but I don't know for how long! The first few months I was considerably better for about 2and half weeks after each one. Then I had one which I just got worse and had a lot of pain, then this months I've had this persistent waterworks problem, so felt I was going upwards for a while and have a blip now. I'm wondering if it's because I'm getting further away from the original loading dose, or maybe it's just a bad spell.

My dr mentioned me organising another MMA test, did you have yours at the surgery/ NHS please? I'm a bit annoyed at being expected to pay for another one! Mine came back at 708, range being 0-280, but can't remember the units, think it was nmol, will have to check. I don't feel I should have to pay this time around!

I hope your injection soon kicks in and you start to see good improvement...take care...

Ps I was really spotty to for months but they're much better now! Not sure if that's a good sign, I'd rather be spottier and feeling better,Lola! Found it worsened in the sunlight too...

[Cherylclaire Forum Support in reply to Jo5454]

Hi Jo5454-

First of all , much as I love a glass or two of Chilean Merlot, I'm pretty certain I'm not an alcoholic ! Haematology guidelines say that should neurological symptoms be present (which includes behavioural & cognitive problems), loading injections should be every other day until no further improvement (checked @ 3 weeks: suggestion). Rapid action means more likely to retrieve what has been lost, so sooner rather than later. This is what I have read, others probably know far more about this.

The reason for reloading me, I believe, was because my MMA was raised (when checked six weeks after my last 3-month injection) which as you said should not have happened after receiving B12..

The reason for checking in the first place was probably because I sent a rather desperate letter to a rather overworked GP- one that I had been seeing for a long time and one that could clearly see the deterioration in my condition despite the injections. She also had spoken to a haematologist, so was probably acting on advice given.

This blood test was done by the nurse at the GP centre, (then sent to St. Thomas') which she followed immediately after with the first of a new set of loading injections, and yes, it was on the NHS. My GP had asked previously for MMA plasma test locally from QEII Hospital, among other bloods, but received nothing regarding MMA in returned results, so presumably NOT a test done there. Whether this is a rare test or not, I don't know.

708 sounds very high, but again, I don't know much beyond raised MMA being an indicator of B12 deficiency, usually used as secondary confirmation after B12 plasma test, and yes the range 0-280 is nmol.

If you trust your GP, stick with it. Try writing if you can't get anywhere within 10 minute slot. Use this if you like. Pernicious Anaemia Society can help if you join them.

Best of luck. We all deserve an opportunity to heal- we're talking about a cheap vitamin, after all.

Also love my spots, as I know I'm topped right up. It's holding onto it that's the problem!

[Jo5454 in reply to Cherylclaire]

Thanks so much for your reply, I actually came on here to apologise to you if I sounded downcast about my recent injections, theyve def been helping on so many levels, but just for a couple of weeks each time, but I was oh so grateful for the 2 better weeks each time! I am getting a bit fed up of this persistent infection getting in the way of things and panicked a bit after having the blood test in case the result will interfere with getting the injections monthly so will blame that if I sounded negative!

No I definately wasn't inferring you are an alcoholic just couldn't believe my dr came out with that! I'd had such a long battle and like you had to resort to letters in the end, just to get the referral for the active b12 test. I quite agree it should be every other day for as long as ng as it takes with neuro symptoms and I tried so hard to get my dr to change his mind, showed guidelines etc, but he wouldn't budge and in the end I was too exhausted and grabbed the monthly injections I was offered for the meantime. It really shouldn't be a his difficult should it!!

Thanks so much for the info about getting an MMA test for free from st Thomas, my dr has left a message for me to pay for this. Once I've gotten over this infection I'll see him ask if they can get one from there for free too, I'd have never known this was possible thanks heaps!

Yes I've joined pa and will contact them. I've given myself 6 months to see how far I'd get first!

Take good care...

[Cherylclaire Forum Support in reply to Jo5454]

I put up a post "Advice on MMA test results for me and Jo5454" and got a few replies that might be useful.

It's very easy to wear us down, isn't it? Has your Dr ever given you a reason for ignoring guidelines? Like him too much to leave him / can't bear the thought of starting again from scratch with someone else who may turn out to be even worse?

Very best of luck- and trust your own judgement!

[Cherylclaire Forum Support]

Yes, I thought it may be too late to bother with MMA for the same reason... so GLAD it was high, Dr. also seemed pleased. Isn't it awful when Drs. are unable to act on what they can see happening to someone, and have to wait for tests (however flawed) as "real" proof of how ill you are. I'm now on Folic acid and Ferritin tablets too as both are low end (but within normal range) and both needed to help. I was tested just before an injection, I think, but will check that for you (I don't have a computer at home, so am in library) .

Previously, I had I think 6 loading injections within a month, then 3-monthly injections. By the 2nd of these, I was in such a poor state of health, I could no longer put a coherent case together for changing the frequency of the dose, couldn't read or refer to folder of vast swathes of photocopied notes, and couldn't understand a word the Dr. was saying! Mostly crying/shouting/silent by then. That's why I wrote to her in a more lucid moment and posted it before I could change my mind (not that I had much of one by then!). I have started again with loading set (until no further improvements possible) and it is quite likely that although 1-monthly injections the next stage for me, there will be further tests to decide if this is permanent or not. Right now, I'm trying not to think about what happens after, just enjoying a bit of normality. Not one bit bothered about the B12 acne either!

I'm going to St Thomas' gastroenterology department in a couple of weeks- hopefully to find out why I can't keep B12 in my system. May/ may not help with case for permanently remaining on monthly frequency of injections. Will let you know. [smiley spottyface]