My life is a living hell, please help

[Babygodmother]

Hi I posted a few days ago "Urgently need help" thanks to everyone who contributed and sorry for not replying personally to everyone.

I was doing quite well as my GP very reluctantly gave me B12 (hydroxocobalamin 1mg/1ml) every other day as per current guidelines, even though I have not been officially diagnosed. He phoned the other day and said he wouldn't be continuing them (I have 2 left) as you can imagine I was very upset.

I told him to put it on record that I was feeling much better and does that not show "an objective response" as per guidelines etc but he refuses to continue it. This was on Wednesday, when I felt really well - minimal symptoms, more energy than I've has in ages.

I have taken all your advice regarding vitamins (12 folic acid as GP won't prescribe 5mg, vitamin C etc to help absorb the iron tabs I'm on and so forth).

However, since yesterday, I have felt absolutely dreadful - fatigue, severe weakness in my legs, my eyesight is effected, my pins and needles/burning feet have returned (though not to the same degree), memory issues again etc...

I was fitted in for an urgent neurologist appointment, I spent two hours in Out Patients this morning. My nerves all appear "intact" and the doctor (a very senior one, and very nice) did not seem worried but has arranged an MRI of my brain anyway.

I stated that we had been going down the B12d line, I showed him the articles and he said that these were just journal articles. Even when I said "these are the updated & current UK guidelines, published last year" and explained that B12d can cause neurology problems (I have several) he just was polite but dismissive.

I am at my wits end. I have been back in touch with Martyn at the PAS who has been very helpful and suggested I will have to self medicate now - he has asked me to get in touch with B12d.org and they can arrange for me to have methylcobalamin, which is supposed to better for repairing nerves. I had already emailed them a few weeks ago but they haven't got back to me. Martyn also suggested B12 boost, sublingual, which I have got from Holland & Barrett.

I am worried meantime that my health will go down the toilet. No one is prepared to diagnose me. I have had more tests done at the hospital this morning, rechecked things again and I am sure they will all be normal, especially now since I have been supplementing. I feel I am even further away from getting a diagnosis now and the doctors all think I am just crazy!

I noticed another post "self help B12 injections" and so many ppl seem to go off the radar and self treat. I am always extremely cautious regarding this as how do you all know what is in the preparations and that it is the genuine article, so to speak?

I have no issues regarding self injecting, I am a nurse and been jabbing myself.

Finally, I am concerned that after 8 injections (every other day), after a week I was beginning to feel the benefit and just wondering why, since yesterday, I now feel dreadful and taken several steps back & my neuro symptoms seem to be worsening again? Am I right in saying this can happen?

Thanks so much. To say my life is hell at the moment doesn't even cover it.

Babygodmother xx

[Lisahelen]

I have recently been diagnosed PA. my gp reluctantly gave me six shots. I went back after a week and said i was still having what i consider problems, ie. Burning and weakness of muscle. He gave me a seventh shot and said i should now be ok until my three month regular one.

Five days later i went back to him with same symptoms and blurry vision as well.

His response was " it can take months for this to take any real effect".

I have also read other posts where people seem to feel worse before they do actually get any real benefit from the hydroxo. So it seems to be a bit hit and miss on its actual working.

I am still having on/ off symptoms but it must be said that i have an app for a game which i played before having any doses, i was ok at, it but post shots i actually got a better result, so maybe something is actually happening for the good despite my some days not thinking that is the case.

Lets hope all will calm down and go well for you.

[debbie177 in reply to Lisahelen]

Can I just say that after I had my loading injections last month I certainly felt dreadful. Awful pains in my arms, don't normally have pains there just weakness. I have read from others that you get worse before better as its your body repairing. Pains only lasted a week or so so seems about right

Debbie xx

[Babygodmother in reply to debbie177]

Thanks Debbie

Feel bit better tonight. Just very concerned no one prepared to diagnose me, as my B12 has never gone below 200 (lowest reading 264, went down from 430 two weeks before!). This is despite many, many symptoms and years leading up to this point

X

[Babygodmother in reply to Lisahelen]

Hi Lisahelen

Yes, that appears to be what's happened - leg muscles very weak and feet burning a wee bit when they had calmed down. And blurry vision.

My one concern is that no one is prepared to "officially" diagnose me with PA, despite the huge, neon flashing sign above my head! My B12 has never gone under 200 despite a multitude of symptoms and long medical history.

What was your B12 reading?

I'm actually feeling a bit better this evening. Hope your OK.

[Lisahelen in reply to Babygodmother]

I originally went to gp with terrible runs. Just happened to mention as an afterthought about burning legs which i had had on and off for quite a while. Thought it was muscles complaining after enforced rest post hysterectomy( seems not so after all). Gp was on the ball ordered b12 immediately. I was down to 179 by this time but had had various deficiency indicators which i had dismissed as aging, and menopause. None of us seem to know we are supposed to have or make the b12 until we or someone we know doesnt have it.

Seems like anything under 3/400 is a low grey area where gps wont treat. Only problem is if you self medicate before managing to get tested you muck the true results.

I have been trawling the web and there seems to be a very strong similarity between b12 and hypothyroid another test gps seem reluctant to organise.

Glad youre feeling better this evening, lets hope both of us and all the others out there in cyberspace continue to get better

[Babygodmother in reply to Lisahelen]

Thanks for that

I have had "IBS" for years, gastritis, migraine, palpitations, tinnitus etc plus many more symptoms, all getting worse, with the neuro symptoms starting a couple months ago.

6 weeks ago was at GP (not usual one) as my whole body was burning up and he said it was a hot flush (I am 49 on HRT - this was not a hot flush!). I put a lot of my symptoms down to peri menopause but it has snowballed recently and I felt just awful.

I hope I get the official diagnosis as I also have a 7 year old who is showing lots of signs of b12d, and my 15yr old is very pale and had problems with her periods since she started 3 years ago, very irregular.

Take care x

[MariLiz in reply to Babygodmother]

You poor soul, all those things are typical of B12 deficiency. It seems to be so hit and miss to get the right treatment. Is there any way you can see another GP for a second opinion? Once you begin self treating you won't be able to get a diagnosis. It also sounds as though your children should be checked. There are private blood testing companies, I believe It is simple to do, but of course it will be expensive. Best wishes MariLiz

[pvanderaa]

The additional pain from the healing nerves if off putting. Make sure you get mild exercise as the healing occurs while the nerves are firing. I.e. Use the nerves that you want to keep.

The hardest thing for me is getting started. Once I'm up and the big muscles are being used I can keep going. The B12 from the injection site is released into the body.

Pain is good as you know the stronger signals mean that the myelin sheath on the nerve is being repaired.

[Babygodmother in reply to pvanderaa]

Thanks yes I think I get that. The leg weakness/blurred vision was very worrying and I felt dreadful. Feel better this morning but exhausted as up all night worrying after my neurology appointment yesterday as it was yet another doctor who didn't believe me. I'm exhausted but it is a nice morning so I will force myself to go for a walk, and try that every day. The mental toll has been awful.

[pvanderaa in reply to Babygodmother]

The worry too is debilitating. I think the brain function and extra stomach acid all consume B12.

Consume may not be the exact correct word, but for someone who doesn't produce enough intrinsic factor to recycle the B12 from the gut, that is the end result.

You should keep a log book and try to measure or assess the severity of the neurological symptom.

For me brain fog and loss of short term memory were the most concerning. A friend who also happened to be a neuro-psychologist, suggested I use a computer game of majong as a tool to measure short term memory function. There are other mind testing games that do similar things.

The problem for someone who experiences short term memory loss is you can't remember how good or bad you were yesterday. By codifying a scoring system and keeping a record in a log book, you get some control back as the log becomes your short term memory. You live in the moment and record in the log.

Recovery is painfully slow, your energy returns almost immediately but the neurological healing is at a snails pace. The log allows you to look back over weeks and months and see the progress you have recorded.

This allows you to also relax and continue with trying what is working and can change when it is not showing progress in the long term.