Doctors.

The more I hear the less I like.

[Gambit62 Administrator]

Hi gonnamakeit - whilst I think I understand where you are coming from is there anything specific you were thinking about

[Hidden]

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[Cherylclaire Forum Support]

There are some good ones out there. My GP has worked hard to find the right people and get sound advice/ referrals/appropriate tests, none of which I had to ask for or pay for. She altered my B12 frequency when I got rapidly worse on the one-every-three-months regime. I had injections twice a week for six months. It was evident that I was improving. Judging by the reaction of the nurses, this was not something that the practice had done before.

I am satisfied that I have seen all the experts available now. Gastroenterologists, neurologist, dietician, haematologists, rheumatologist, ENT, oral medicine, DNA specialists. When I eventually started self injecting, my GP understood that decision.

She continues to monitor my serum levels of folate, ferritin, vitamin D and thyroid - all of which have been erratic for a few years but now improving and more consistent.

My early diagnosis of functional B12 deficiency came, after I deteriorated, from serum test results of MMA level which she had to request three times. She remembered this from treating a patient with similar problems ten years previously.

Much has been tested for since. None of the experts have found any alternative diagnosis or any other reason for raised MMA levels once B12 replete. I first went to the surgery with problems in 2015.

I am still "seeing" a rheumatologist because I have osteoporosis of the spine, and an oral medicine consultant for help with what I consider to be prolonged B12-related issues (angular cheilitis and burning white-coated tongue).

Can't ask for more than that.

Find someone you can talk to. Don't waste time looking for a B12 deficiency expert.

A good GP, one who cares, will do what we all do: find out.

[Hidden in reply to Cherylclaire]

That is brilliant. Someone who is on your side and fighting for you not against you at every turn. And testing for the evidence as well. Is that all on NHS or insurance? Here you could wait for years to see any specialist. My friend went deaf from a treatable condition as she waiting for four years! They did give her a hearing aid but no consolation for the damage incurred. There must be just so many people who are in a state that symptoms that aren't making you fall over with them are just at the bottom of the list. I've only been taking b12 for two or three days..this is day three. And my tinnitus is significantly quieter today. When I had my blood test a few months ago it looked normal but I had been taking a lot of sprays. I stopped because I dropped everything as I was having very weird heart things that they didn't catch on ECG but when I started to take more magnesium... Four tabs instead of one and getting the full RDA that went away thank goodness and only came back when I forgot my tablets for three days so I haven't dared to stop. But I was taking this and that and getting strange feelings in my legs so I had stopped the b12. Someone on here said it can feel weird when it starts to rebuild the blood and nerves that have been starved. so this time I'm only taking one spray so that it might be a more slow recovery and less side effects. It worked when I had all over body tickling feelings but as I say I didn't continue past the weird feelings in my legs. I'd rather be tested now than wait until I feel aweful enough but I'm sick of dealing with them down there. To find a new doctor I would have to pay 90$ just to meet one and see if I thought they were good and only allowed to choose one withing 2k of my address. Since my levels were normal when I was taking it I assume I am absorbing it OK so I will just keep taking them at home. And see what happens. Re the tongue thing it isn't thrush by any chance? I had a tongue so sore and white and it was the chemist not my doctor who figured that out and had to use a gel for a week or so. Thanks for sharing your story ..there is hope of finding one! The unicorn exists!

[Cherylclaire Forum Support in reply to Hidden]

Yes, NHS. No private health insurance.

I really found it far too difficult to work everything out without help.

Didn't even know there was a B12 to be deficient in, so at first I was trying to read all the research, highlighting anything useful. I didn't have a computer either, so would sit in the library, reading and printing off copies to read later, asking endless questions on here of "those that had gone before". Learning anything at all was difficult- my memory and concentration affected among other things.

My oral medicine consultant has tried really hard to grow cultures from swabs - so far, nothing, and as you can imagine, covid ground all this to a halt. I am quite certain if it was just thrush, he would have recognised it as such ! You'd like to hope, wouldn't you ?

"All over body tickling feelings": I remember a feeling like that.

Some say ants crawling under your skin (formication: great word) but it always reminded me of those iron filings at school which you could shift with a magnet - over and over they'd flip, trickling along in their effort to escape the magnet. That's what it felt like just underneath the surface of my skin on my arms and legs, moving toward my fingertips and soles. Then total exhaustion straight after- and a long nap. Possibly nerve repair. Weird.

Tinnitus, by the way, has been found by the Pernicious Anaemia Society survey to be by far the most common symptom of B12 deficiency. We don't all get the same things, which alone can make diagnosis difficult. For instance, I never had headaches, and although often dizzy, I never fell over or had balance issues.

I can't stand with feet together and eyes closed without swaying almost immediately though (really DON'T try this alone !)

[Hidden in reply to Cherylclaire]

Yes years of antibiotics for ear infections later some random person told me b12 that was years ago and I completely forgot. I thought I had fleas or scabies or dust mite allergies I could swear there was something moving but I looked and nothing was there. No changing powders or anything worked. Took the spray and it eased and I thought maybe its psychosomatic cos sometimes rubbing lotion on helped too... But only momentarily ..over the course of a week or so it came and went and eventually just went! I kept taking it and then my legs started to feel heavy and weird so I stopped. I had no idea that my memory issues and even heart things which went away with magnesium could have all come from needing b12. And such serious consequences if it had gone on for another 8 years! And its so safe to take I feel like anyone with tinnitus should be told to try it and see if it works before anything else ...antibiotics they gave me were so dangerous and banned for trivial infections ..and they didn't even test to see if it was an infection just handed me dangerous tablets when they could have handles me b12 without a test the same way they handed me antibiotics without one. It just isn't sensible. Give people the most common least risky things first and if they don't work OK fair enough try antibiotics or whatever but first do the least harm for the most likely cause. It just seems so playschool level basic that I cant get my head around the thinking. ...

But yes yeast would culture very easily. Do you do anything like chew gum or use mouthwash? If its thrush you will know because it is a coating that you can scrape with a fingernail and the white crap comes off. It doesn't always be white coated though I've had both where it was white and once where it was not but it mostly does be at the very back of your tongue and really gross. Could it be vitimind deficiency? That can cause burning feeling and your mouth feels dry and kinda tastes weird. I've had that too and not known what it was and it went away when I started taking vitimin d a few years ago for sleep issues that I've had since I was a teenager ...I'm realising I've been malnourished all my life. I'd come home from school and eat a pot noodle and spent many years running around on nothing like some kind of waif just hanging out with friends and not eating properly till I'd go home to my moms. And even the healthy diet I thought I had in the last few years eating veggies and salad and fruit... I tracked it and even on days where I had an egg for breakfast and some meat for dinner I wasn't getting enough iron on any of the days of the week. It was wuite a shock really. To get the RDA of things I'd have ti eat a lot more than I am accostomed to eating . even now I'm only reaching my levels by taking supplements. I just have never eaten that much food! I have to really force myself at times but I do feel better for it. I just don't keep it up so supplements for now until I can change lifelong habits. I hope you find out what it is!

[Cherylclaire Forum Support in reply to Hidden]

Yes me too, but only really in a mildly interested sort of way. I appreciate that that's quite easy to say when not in pain and when not affected by life-altering symptoms- or perhaps I've already altered my life sufficiently not to notice !

Not likely to be vitamin D deficiency as I take that on prescription- I was found to have osteoporosis of the spine. I broke both shoulder joints - in accidents ten years apart, luckily. If this hadn't happened, I wouldn't have generated a computer-ticked box and had a Dexascan appointment, so may not have found out. Mixed blessings.

[Hidden in reply to Cherylclaire]

Ah yes its all fascinating. I stomp and stomp during the day just tk make sure my bones are still there. I've wondered if a tuning fork on the dhin would help detect a change in bone density...it should the laws of physics being what they are... Just out of interests when I'm not in any distress. Lol.