Can’t believe this...??

[Queeniz]

My eye sight has started to get f**ked up & my GP doesn’t care!!

He said “it’s probably nothing”?? Wtf 😲

[wedgewood]

I would go to a competent Ophthalmologist and ask advice. B12 deficiency can harm eyesight in some people . I hope that you are getting sufficient B12.

[Queeniz in reply to wedgewood]

I inject vit B12 every other day cos it’s that low & im really falling apart

[olicana1949 in reply to wedgewood]

Im new to B12 deficiency. How can you monitor at home (or other than GP and possible symptoms) your B12 levels to know for sure if you are low from one week to the next.

[Queeniz]

Has anyone else had problems with eye sight from Pernicious Anaemia ??

Or balance , walking strange or wobbly on your feet???

[fbirder in reply to Queeniz]

Yes. The walking strangely with poor balance is a symptom of nerve damage caused by a B12 deficiency.

It is also a symptom of nerve damage with several other causes. I’d be surprised if it is caused by a lack of B12 if it’s getting worse while you’re injecting every other day.

That sounds exactly like what happened to me. I went to see a neurologist. Well, two, because the first didn’t know what it was except that it wasn’t B12 or diabetes. He second, a specialist in London, correctly diagnosed me.

So demand a referral to a neurologist.

[Queeniz in reply to fbirder]

I went to a neurologist few years ago & that was a joke, he asked me “what’s been happening ?”

So I started to tell him & he stopped me saying “I don’t want to hear GP bashing”

I hadn’t even said anything & then he told me times up and showed me out the door .... I never heard from them again

[Nackapan in reply to Queeniz]

I've seen 3 neurologists .It's important to be seen if you are getting worse.

When I was well enough I had to push for one of my daughters. She eventually got diagnosed by The NationalHospital in London.

I've had another referral out of area but it's been on hold for a year now. So I would get into the system as soon as possible.

[Queeniz in reply to Nackapan]

I can’t even see my GP right now, I used to able to call GPS but since COVID 19 my Drs have stopped taking phone calls you have to go online & they’ll get back to you (if you’re lucky) within 48 hours..... what bs is that eh???

[Nackapan in reply to Queeniz]

Just ask them to do a referral online .

[Queeniz in reply to Nackapan]

Hmmm I haven’t done that already ??? 😜

[Nackapan in reply to Queeniz]

Havent or have?

[olicana1949 in reply to Queeniz]

Its the same for me (in Scotland). Initiating a phone call directly t a given GP is a 2-3 week wait, or else go on line and ask them to call you (extremely tedious). Its a degradation of service in my opinion, but thats the way its going to go.

[Phylenejo in reply to fbirder]

What was the final diagnosis?

[fbirder in reply to Phylenejo]

Chronic Idiopathic Axonal Polyneuropathy. onlinelibrary.wiley.com/doi...

It's fairly common, especially in tall men in their 60s.

Starts as numbness in the toes which gradually works its way up the leg to, in my case, the calf on one side, ankle on the other. Paresthesia soon develops with tingling, pricking and burning. The paresthesia gets so bad (red hot needles being stabbed into my toes, especially at night) that drugs are needed to sleep.

I have no reflexes in by feet/ankles and no proprioception, which is why I can't walk properly and have a propensity for falling over.

I have slight numbness and tingling in my fingertips.

Those symptoms developed over 6 to 9 months. When I saw the doc in London he diagnosed CIAP and predicted that there would be little change over the following six months. He was right. When I saw him 9 months later everything was the same.

I was told that there would be a slow degradation over the next few decades. It's been just over 4 years and it has got slightly worse.

[Phylenejo in reply to fbirder]

Thank you

[Dragonfly1962 in reply to Queeniz]

I had eye sight problems, before being diagnosed with b12 d. I went to optician who at first didn’t want to check me out and said your sight cannot have changed in such a short time from last test! I insisted on a test and he was shocked that the prescription had changed so soon but didn’t have any insight into why! It was only when I was diagnosed with b12 d that I realised why my eyesight was bad. I also know when I’m due an injection as my eyes start going blurry. Also I start having balance problems, walking into door edges, falling over nothing etc .

[MoKayD in reply to Queeniz]

Before starting my B12 shots I felt like I was walking like the character, Woody, from the movie Toy Story. My feet felt floppy and my knees and hip joints felt like they were loose. I was very unsteady on my feet.

[Luac]

My GP refused to refer me to a neurologist because my symptoms werent neurological enough - i had terrible brain fog and low mood with pins and needles in both hands on a daily basis as well as three types of tinnitus (the usual one, pulse in the ear and weird sound when i scrunch my eyes. He said i didnt have balance problems so it was ok. Do you think it is important to see a neurologist? I am to see an audiologist on friday fingers crossed. I also get night blindness in one eye. My gp has been doing the online/phone consult since before covid started, but i feel like i have a large list of symptoms that come and go but i never seem to get anywhere, its like a nightmare and i feel like im going crazy.

[Nackapan in reply to Luac]

I get that as I looked back in my diary. I was discharged after one consult with a neurologist who prescribed amitriptyline.

That was Feb. 2019.

I've since paid. As j could've been referred back in to the NHS but actually coukdnt tolerate the environment. Lights mainly and noises.

I mainly wanted to gi to rule out things

On the NHs I dus have 2 brain mri scans and one CT scan.

I also saw a specialist optician at an outreach surgery. Was concerned about my sight.

I still csnt read a book and the text disappears from the right.

Severe light sensitivity to artificial lights.

Was si nauseous after trying to uses this small screen for an online shop.

So as tiu say symptoms continue.

Mine I think a vestibular disturbance or Occipital neuralgia

I'm in the system ti see a neuro opthalomogist

Have been waiting a year now.

That is too specialist to pay for as very different 'ball game ' I've checked and am still 'on the list'

Of courses not even keen to go now in the present climate . In reality I should be been seen before the first lockdown.

Not sure if ENT appeooriate now

My hearing was checked but fine.

Also have tinnitus . Noises sensitivity . Cant uses the landline or watch tv. Sends my head crazy with pains and then cant walk in a straight line.

All I've been told si far is 3 conflicting theories . With a no quick fix and actually drugs to trial. After a had experienc4 with amitriptyline I declined the trials. Have also got serc. Prescribed but too scared to trial that at present.

[Luac in reply to Nackapan]

Im so sorry to hear all that nackapan, I really hope you get sorted out.

[Nackapan in reply to Luac]

Thanks and you!

[Queeniz in reply to Nackapan]

Oh My God babe I’m sorry but I know what you’re going through believe me

[Luac]

Btw i was also told that by nurse and gp that b12 doesnt affect eyesight when it clearly does, i think i would get some info from the pas website and write to your gp or their manager requesting a referral.

[Queeniz in reply to Luac]

Oh My God finally someone else who’s having nightmares with getting help from GP, I’m sick of it I ask the dr to call me they never do & im just getting worse day by day x

[Luac in reply to Queeniz]

Apart from the gp, there is no connectivity between gp, gastro and other specialists. I reccomend that you write out a list of all your symptoms and issues and send them politely to the practice manager. I think i will do this before too long.

[Queeniz in reply to Luac]

I won’t deal with the practice manager cos they are only there to make problems go away f**kers.

[Luac in reply to Queeniz]

I would be looking to change gp.

[Nackapan in reply to Luac]

Yes do that. Thats how I got my referral .I akso got the specialist optician to write tu Gp. Health of eyes fine hence the referral.