Hearing Problems

[heather_turner]

I've recently been diagnosed with pernicious anaemia but I haven't been given a lot of information. I struggle a lot with with physical symptoms, but I'm trying to get my head around how much it affects you mentally. I've had tinnitus since the age of about 12, and my hearing has gotten progressively worse; I was trying to figure out whether this, as well as my poor sense of smell, lack of balance and concentration problems, is all related to my pernicious anaemia, and whether any of them will go away with successful treatment.

[Fudgemanjim]

In my experince and from.what ive heard it can effect lots of things... one thing i didnt reliese is how bad my vision was until more regular higher dose treatment of b12 changed it... but on the hearing note ive had tinitus like symptoms pretty much always...(less so in past few months since seem to really be starting to fix problems or at least the scary ones an a few others) but i do remember having terrible hearing as a child amd going back amd forth to drs and them not figuring out why... coinscedently i was on 1 jab a year (doctors were clear they didnt understand my pa back then apparently... but i take the docs with pinch of salt now with the contradoctioms amd what not) when that got a little more regular supprise hearing and almost deaf worries (well thought i may go that way ) dissappeared! I should point out i renember none of this... this is just recounting from what my mum has told me (i struggle to renember other day or what ive done or i put kettles im fridges.... brain fog is next on mynlist to dissapear i hope... im pretty haply reading your comment made me renember the story of mum saying about my hearing thiugh before id never renember woo !! progress) so sadly my story isnt exactly first hand....and really PA did a whole lot worse than hearing issues i dont renember so i never focused on it much.... ermm sorry i think ive got distracted...my point was.... i had bad hearing (from what told) when i was young on very low amount of b12... seemed to improve woth more over time... no evidemce that the two are related though.... alot of my other issies definitley were /still are...but yes hope its of some help... others will be more knolledgable... i hope i made some sense though

[heather_turner in reply to Fudgemanjim]

It’s a funny thing to focus on really, considering how much the other symptoms affect my life, I think I was more curious about this because it’s one of the things I don’t know a lot about! I remember reading (pre-diagnosis) that lack of b12 can cause neurological damage, causing tinnitus and other stuff, but I don’t remember a lot of what I read and I haven’t found the website since!

Thanks for the insight anyway, it’s nice to hear that your eyesight improved after injections

[clivealive Forum Support in reply to heather_turner]

Hi heather_turner It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are now having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

What frequency of "maintenance" injections are you on?

If you can get to see a doctor please also ask him/her to check your Folate level as this and the B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" and over 75.

I wish you well

.

[heather_turner in reply to clivealive]

My injections are every 3 months and have been for almost a year now, apart from the initial 6 fortnightly boosters. I’ve been trying to book another appointment for a couple of weeks to discuss changing the frequency of them, but the medical centre in my town is usually booked up very quickly, so I’m still working on that one!

It’s funny you should mention folate levels though, my cousin just sent me a link to an article about how quickly your folate is used up during treatment, so I was going to bring it up when I manage to book an appointment.

Thanks for you help, it’s reassuring to know it is possible to have a long and “healthy” life even with this problem :’)

[clivealive Forum Support in reply to heather_turner]

As you still have neurological symptoms make a list of them and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

These and the B.N.F.guidelines tell your doctor how to treat you.

The relevant section is headed For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

I hope you manage to get an appointment soon and please let us know how you get on.

[heather_turner in reply to clivealive]

Thank you very much for the information, I will go in armed and ready! I should still have my initial list of symptoms from last year, so it would be interesting to see how many of them have improved, against the problems I’m still facing.

I’ll keep you updated and let you know how I get on at the doctor’s, I’ll definitely bring someone with me; my family seem to be a lot more stern than me. It’s always nice to have back up

[ChitN in reply to Fudgemanjim]

Hi Fudgemanjim,

How long did it take before your eyesight improved? It’s one of the things I’m also struggling with...I’m on my 6th week of every other day injections.

[Fudgemanjim in reply to ChitN]

Ermm well to explain as clearly as i can (time perception is awful and i may not be too clear and i have to geuss alot) but id always noticed things looked a little different after my jabs on nhs....better colours everything sharper clearer.... but it was brief....then when i got really really ill (a few months before gettung really ill i kept complaining about vision bluring in and out and focus and lots of vision stuff but i thought because aging... (im 28 i think...or 29... not sure sorry) had many eye tests ...all said i was fine so i thought aging...oh and certian lights really set off horrid migranes)

anyway got really ill like wheelchair stabbing heart collapsing couldnt open draws or doors constant shaking kind of PA stage... went abroad, for docs as UK said imagined and not real , to cancer , to broken rib to asthma to not asthma, PA has no symptoms.....u get idea...

anyway doc in paris gave me higher amount 4 ml jab amd first thing i noticed was dramatically better vision , (didnt care as other stuff but it helped a lottle with all that too second thing noticed was easier breathing yay) visiom faded in unision woth the other symptoms worsening.... ermm. Then started doing 4ml every 2 days or every day (i really dont renember as too ill at this stage i did write it all down but dont know were book is) for 2 weeks or so...vision gradually improved i think but to be honest i was focusing on other stuff.... now i do b12 as symptoms show (which is basically every day to 3 days... im working afain now so its everyday) its been maybe 3 or 4 months (1week working)? And my vision now just blurs and focuses odd and goes woerd very very rarely and usually only when ither symptoms are showing minor signs (compared to before... i mean i can walk and everything now now stick)....

So in awnser to your question... b12 always made my vision a little better... but properly better like now took maybe MAYBE 2 month? Again ive been focusing on the other bits and now fog....im also not sure if maybe alm the other symptoms made sight worse or what .... all i know is its alot lot easier to read ... see distant things, follow train info, colours ermmm everything really... and i geuss its got that way and stayed that way over 3 months of aggressive/very reg treatment... to me the diffrence is very sugnificant, but vision does go sometimes...but seemingly only when other symptoms play up too also dont know if all the other symptoms being relieved by b12 (quite alot of pain and scary stuff) make the vision thing seem much better as i geuss it all puts pressure on stuff ...but in my opinion it did improve stuff due to reading and everything being so much easier

Hope ive helped and not rambled too much

[Fudgemanjim in reply to Fudgemanjim]

Would base my experibce on yours and expect ssme though, i read ine guy on here who found brain fog dissappered first then his other symptoms.... weras im still awaiting brainfog to go... next on the list (im told its a little better notice improvments on occasion... nothing huge though)

Everyone differs i geuss depends what starts to fix first

[Ela1]

I naver heard about it but I also have gearing problems and not very strong send ofdmell

[Fudgemanjim in reply to Ela1]

Ahh i have a terrible sense of smell! Never thought b12 possibility though i just assumed i have a terrible nose

[heather_turner]

I can’t remember where I read it (will have to have a proper look when I can concentrate) but I’m sure it said your nervous system can be affected, which is why a lot of people suffer with sensory problems.

I just really want to know how likely it is that those problems will disappear over time, or if the damage done is permanent. I suppose it’s different for everyone, depending on how long they’ve gone untreated etc.