To ask Mumsnet to diagnose me?

[Woeme]

Because I give up and feel I'm banging my head on a wall.

I know you can't actually diagnose but if this sounds familiar to anyone I would be grateful for help!

I've not felt 'well' for over a year but the last few months I have felt really really poorly. All the time. Some days it's a fight to get up for work.Utterly exhausted.

A few weeks ago I started to have occassional hand tremors both lifting things which I know isn't much to worry about but resting also.
I also have weakness in that arm. There are three stacked pans on the stove. I can lift them easy with my right but not my left.
Doctor said my left hand is weaker because I don't write with it ..

Dizziness so bad I have to lie down, stiff joins, intermittent blurred vision, pins and needles, poor balance, migranes, forgetfulness and much much more.

I'm on B12 jabs already but tested negative for pernicious anemia. Doctor says I can't still be B12 deficient as you can't be deficient on jabs...

Help!

I haven't read the full thread
My mum has b12 issues due to being celiac, she also has pernicious anemia. She gets jabs but they're no where near often enough, and they won't do them more frequently. She now self injects in between the doctor ones. Before my mum was diagnosed with all of this she had tremors and dizziness, weakness, extreme tiredness, etc. When she misses jabs this comes back so it is the b12 for her. Before she self injected, the effects of the doctors jabs only last a couple of weeks and then she would feel really ill again.
Sorry, I hope this makes sense and isn't too jumbled up

How old are you? Is the left arm consistently weak or does it come and go? When you pay attention to your resting tremor does it get better or worse?

My daughter is B12 deficient. She has her injections every 6-8 weeks as 12 weeks was to long, worth arguing with your gp about.

Where does the Mumsnet preoccupation with B12 come from. It keeps coming up. Are there websites or forums claiming doctors ignore it?

I would reccomend having your bloods done privately and seeing what the level are the Uk B12 levels are very different to the levels in other countries
I had similar symptoms actually more than what you have and have been diagnosed with fibromyalgia recently through the pain clinic
I had constant pins and needles , tiredness that was horrific

Always felt cold and would sleep with a hot water bottle even in the summer this year when I wake up my hands would be numb like blocks of ice and I needed to run hot water on them to get any sort of feeling if I didn’t they would stay numb Crap memory forgetfulness the list goes on and in

I get B12 ampules from Germany and self inject at least once a week often twice / 3 times
I take Galfur Syrup for low iron
Folic acid
Vitamin Dspay
Vitamin c tablets
Cariton tablets
Drink orange juice every day
All of this has made a big difference

I’m still in pain I sleep forever but it’s not as bad as it was before but if I forget to take anything for say 2 days I am fucked within a day and right back where I started

Floatyboat the b12 level in the Uk is not as high as other countries so if you had a level that is seems to be sufficient in the Uk
in France or Germany you would be considered well under the level that’s normal and treated for it properly

its well know that lack of b12 can cause all sorts of problems
The symptoms if your not aware is often put down to age; working to hard ; stress of life in general
But once you realise that being deficient in certain vitamins can cause all sorts of long term problems it makes sense
Anyone who has had biatric surgery or gallstones will suffer from lack of B12 / vitamin deficiency but often it’s overlooked
People that lose a lot of weight or on diets can be lacking in vitamins which can cause al, of the problems

There are lots of forum health unlocked being one of the excellent ones that’s gives lots of advice on the levels of B12 and what to do about it

Happened to me - I have hypothyroidism and fibromyalgia... Just before being diagnosed with the thyroid I felt almost as you described

Thank you!
I joined FB just for the B12 groups but was rejected as I hadn't been on FB 12 months.

My GP says Fibro is just something you diagnose when you have no answers! :S

Blood tests came back as low B12 and Vit D but been treated for that.

Only other option is our GP do that new online GP thing but I have no experience of it .

I have been bit on holiday last year.
Weakness is there constantly.

I know you can't actually diagnose but I just don't know what to do anymore.

Sorry B12 is 8 weekly with tablets in-between.

I'd at least ask your doctor to check for Lyme Disease. It might not be that at all but it can at least be checked with a blood test. I've known two people now who have had an array of fairly vague but worsening symptoms that have (eventually) been diagnosed with Lyme Disease, but it still isn't tested for routinely in many places. I believe you can actually pay privately for this too. Having seen what Lyme Disease can do firsthand, I'd consider doing so if it were me.

Low magnesium?

Are you on thyroid medication?

Have you had your thyroid tested? If so what were your actual results (with ranges - these are the figures in brackets after your result)?

I imagine lots of blood tests have varying ranges in different countries. Surely to have an opinion on what is the appropriate you need an understanding of how that range was determined and evidence on what health problems can be associated with different levels. What B12 level is deemed adequate and why?

Low sodium can cause the symptoms the poster described but nobody cares about taking sodium tablets to get their level nice and high. Maybe someone could start a FB group about it.

I know a woman in her 40s who had similar symptoms though the weakness and tremor got progressively worse. It was Parkinson’s. If you are concerned enough to ask strangers on the internet, who can come up with any number of answers, you might want to go back to a GP...

See your GP and ask to be referred to a Neurologist. The sooner it’s investigated the sooner you can have the treatment you need.

I experienced similar symptoms and after referral to a Neurologist and brain and spine MRIs I was diagnosed with MS, I am not saying it is that with you, there are many other conditions that the Neurologist will need to exclude, based on my experience. I know it’s scary, but see your GP and get referred to get the answers you need.

I would second what prevs posters had said if you are on a private health care scheme or can afford to pay to go private do it. I did this and had my dx within a week. Unfortunately there can be lengthy delays for appts on NHS.

Good luck OP, I hope your health improves very soon.

Could it be malaria? you said you was bitten on holiday. Just a thought

I am another random mner, but I do work in neuro office and spend hours writing up clinic letters full of these symptoms. Sometimes it's MS or similarly concerning, sometimes it isn't.

I would say, though, that if you can't persuade your gp to refer you within the nhs, find out about a private appt. Having said that, make sure you check about the costs of nerve conduction studies, EMGs etc, and whether they are included, because it would be awful to think you just pay the consultation and then get other surprises that you potentially cannot afford.

You were bitten by a tick?

Agree with many others, B12 injection which is hydroxycobalamin cannot be absorbed by many sufferers and just circulates giving false high levels

You need to check your folate levels, if they’re low you cannot absorb b12 as they are co-dependent. You also need to ensure vit c is ok too

While you’re at it take a look at MTHFR, many of us have an alteration in this gene affecting our ability to methylate

Simply put we can’t break hydroxycobalamin down to the bio available form Called Methylcobalamin, the simple answer is to use B12 losenges of methylcobalamin (I use Jarrow)

The U.K. is just about to improve thanks to the work of Martin Hooper at PASOC but we are at present negligently out of step with the rest of the world

Nerve damage is proven to occur below 500 and is treated at this level around the world yet the U.K. only treats below 125 by this point permanent damage has often occurred

Go and have a look at the Pernicious Anaemia Society website. You may need more frequent injections. If you join I understand that they may write to your GP for you on your behalf. Their forum on Health Unlocked is also a good place to post your question for initial advice.

As others have said you should have been refers to a neurologist for those symptoms if no other cause could be found. Could also be thyroid possibly. I believe the PA test can sometimes give false negatives.

Have you been prescribed any other medication apart from the b12 shots? Perhaps for migraine?

My preoccupation with b12 deficiency comes from being b12 deficient, struggling to get a blood test, finally being allowed a blood test and a hand full of injections, then huge confusion and inhelpfulness by all professionals because I wasn’t diagnosed with pernicious anaemia.

Do you feel a bit better for a couple of weeks two weeks after the injections.

Could self medicate, get private injections or try the under the tongue tablets

Haven't read the whole thread but your description spoke volumes to me as it was exactly how I felt when my vitamin D was almost non-existent. I'm not a doctor and would never normally give medical advice online but I recommend asking your GP to test your vitamin D levels and taking the largest supplement you can find in the meantime. It does take months for those levels to rise appropriately but if it is vit D deficiency it's easy to treat.

Thank you this is most helpful!
Regarding medication I have B12 and I think my original level was something like 82 although I can't remember , it was very low I know that , I've finished a course of Vit D (my level was 12), Propranolol for migraines, I was on naproxen and omprezalole (sp!) but found out myself you weren't meant to take that with B12 issues.

B12 deficiencies was picked up 7 years ago as it's mentioned on a hospital letter but I didn't know what it was and it wasn't treated until recently.
I had the instrinsic test but that came back negative.
Initially I did feel better after jabs but now I just feel awful the entire time.

I was bit on holiday loads but not sure by what . I presume not a tick as don't they stick in when they bite?