Wrong diagnosis

[Mollieharry]

new Here,just wondering if anyone was diagnosed for something else and then it turned out to be a bit b12 defiency?

[wedgewood]

It’s usually “ There’s nothing wrong with you . I think you are imagining it “

[kaybeena in reply to wedgewood]

Yep. You must be depressed. 🙄

[Nackapan]

The only thing on paper from a blood test is b12 defiency. However the second neurologist said post concussion syndrome because of sizzling in head no use and light sensitivity and headaches/migrains. I think most symptoms are the B12 defiency as the injections have done the most healing and if your myelin sheath gets damaged both conditions have the same symptoms. I was worried he would stop the injections but he didn't. That said to me he wasn't sure. Confusing though

[Nackapan]

Oh yes I initially was told in a and e I was having panic attacks! I was so angry . I couldn't walk straight

[Momac52]

A neurologist suggested that my symptoms were functional and I should go see a physiologist, I told the neurologist where to go, he was not happy. It has been stuck in my notes and every time I see a doc , they get a look on their face 😔😔

[Joey4]

Hello Mollie, yes I was diagnosed with Fibromyalgia (spelt wrong. I think). I was told no to B12 deficiency even when my levels were 170 because my Local Authority guidelines only state B12 if levels drop below 130. When I asked to be re-tested as symptoms were escalating, my levels had dropped to 115. I now have diagnosis of PA and fortnightly injections for life. It has been quite a journey! Take care and best wishes. Jo

[KBird01]

Still haven't got a diagnosis, but so far I've had suggested diagnosis of menopausal symptoms, depression, fibromyalgia and 'general malaise'! Despite neurological symptoms GP still delaying on decision to give B12 shots, passing the buck to heamotologist who hasn't replied. Was more than willing to prescribe antidepressants and HRT tho. Got to stage I couldn't work with fatigue and lack of concentration and bought my own B12 injections. Am now 80% better in 2 weeks, but obviously that can't be due to B12 deficiency as I don't have one according to my bloods...

Point of the story is it's tough and many people have this experience and end up feeling a right hypochondriac. Keep utilising this group. The support is amazing. Saved my sanity! 😊

[GastritisB12]

Yes lol! First A & E gp thought it was thyroid sent me to my GP for tests. My gp told me it's just some kind of virus just go home and rest. I asked without fever, she said yes.

Two weeks later saw a lung doctor that I knew he gave me proton pump pills.

Felt really bad went to a&e again GP there said it's just a virus.

Finally saw a leading cardiologist because I didn't know where else to go. He tried really hard bless him. At the second appointment he ordered more blood tests and I asked him can you throw in B12 just in case (at that point I finally read about it online).

And of course it was low, as well as low iron. That was a month and a half after I started feeling really ill. He prescribed injections but he still did not believe it was just the B12 and sent me off to a gastro and a endocrinologist. But only B12 related stuff was found gastritis etc.

In conclusion if only A&E departments and GPs would routinely test B12 when symptoms are a bit strange and vague they would have saved their time and patients time and our suffering.

[SunnyWorld]

LOL. can't wait to read all the replies. Most of us I would think. B12 is the last thing they test for as most doctors think it's something only the aged suffer from. I'm probably down as a hypochondriac in their notes it too soooooo long to diagnose me. They didn't take me seriously at all until my husband rang up demanding someone come out to see me as I couldn't function or get out of bed. They had me on various anti depressants which were useless I wasn't depressed I just couldn't get any oxygen plus other numerous symptoms.

[palometa1]

It was 9 years before I got my diagnosis of PA doctors and consultants could not agree what was wrong with me. Treated for Meniers Disease, Brain Tumour, Labrathynitis so much damage done that is unrepareable . Health in decline this last year so have decided with the advice and information from all the lovely and helpful people on this forum to self inject early days for me yet re improvement but will continue to si.

[Nackapan in reply to palometa1]

Hoping the si give you some telief

[reabook]

Hi mollieharry - yes - my symptoms were serious enough for gp to diagnose suspected ms. Once all testing and an mri showed that it wasn't and blood work showed a very low b12 level she pretty much wasn't interested even though I'd lost my job. I'm still trying to get b12 more frequently than every 12 weeks because of neuro symptoms and I'm a few years into this journey now. The PA society are very helpful should you need advice.

Best wishes

[SunnyWorld in reply to reabook]

The doctor wasn't interested?? That's terrible! I think it may be down to the fact that they don't think its that much to worry about as long as you get the injections. I believe that because of the PA society it's only now doctors are becoming more aware of the seriousness of PA. You are entitled to 8 weekly now if you feel the need and the doctor agrees. It's in the new guidelines.

[Mollieharry]

Thanks for all your replies.its shocking that so much damage can be caused by a b12 defiency yet it’s sometimes the last place the gp’s look.i was diagnosed with ra a couple of years ago and recently had new symptoms that were different from the ra pains etc.(I think we know our bodies)gps kept saying it was the ra which wasn’t controlled properly.bloods done repeatedly,dmards changed,but no actual b12 test done till I eventually said I had been reading up on it and thought I could have this as well.could they just please check,they did,and after it came back abnormal twice i now have an appointment to discuss next move.

[kaybeena]

Yes. For nearly 10 years. I was so sick. Was blacking out... while driving... making dinner. I wa once found at the bottom of a pool and woke up in the hospital. The delay in diagnosis caused some permanent and progressive health issues for me. I dated getting sick in the 90s and was final diagnosed in 2008. USA. While there is most awareness now... still, be aggressive.

[VMITCHELL78]

Hi Molliharry,

Yup, has 6 loading doses, then after 3 months blood test came back as 'normal'

After a few more visits to gp was told I'm depressed... Knew it wasn't, gave up on NHS and went private until couldn't afford anymore so now self inject.

Good luck, think most of us have to take control and sort for ourselves! X

[KimberinUS]

holy hanna banana! what a question.

over 18 years ago, my memory was so bad i thought i had a tumor in my brain and told my doctor this. She prescribed antidepressants, which i would take for a couple of years each time i would get "depressed."

Then my period which had always been clockwork, stopped when i was 30 for over 2 freaking years. Well of course it was just early menopause. idiots, i still have my period at 48.

When finally diagnosed b12 deficient at 43 or 44 years old, (first time it was ever tested) they told me to take a suppliment, which i did for 30 months, while i got worse and i thought i had dementia and was gonna to die early. Of course by then i knew better than to say that to a doctor.

i Finally took my health in my own hands and started injections. lo and behold, i could comprehend what i was reading again, as previously my brain was so foggy i felt medically retarded prior to injections.

From info on here, i read about h pylori for the first time ever and had to get into an arguement with my doctor to get tested. That doctor thought it was a thyroid issue, as t3 was near bottom of range, but magically tsh was perfect or possibly, yet again, i might be perimenopausal. Well i was positive for h pylori!!!

So yes, im certain im noted as a hypochondriac and difficult and aggressive in my medical records.