Where to start... l've had very mild deafness in my right ear for about 10 years and intermittent tinnitus for about 5 yrs. I've also had various degrees of vertigo. I just put the deafness down to working in very noisy environments in my youth. The vertigo l put down to tiredness as it only ever lasted hours or a day or so. This last year has been my worst ever. I woke up every morning with a hangover type headache numbness in my legs, right arm and eventually my nose, lip and chin. I suffered regular fatigue and hypoglycemia. We were towards end of covid so it was difficult but l persuded gp that as l'd had gastric surgery 10 yrs ago l may need B12. l started B12 injections and they have relieved all the tingling numbness. And l now self inject 3 times a week at my own cost. As my gp only does every 3 mth injections. I was feeling much better.
Then in Summer 2022 I had 2 bad falls and many stumbles, and to top it off, lost a 3rd of my hair in a month. This prompted a gp appt... l hate going drs! I saw a new gp and she was fantastic. She really took note and said she'd consult with her colleagues about an mri. That was August 2022. I just got the mri Jan 13th 2023 and am awaiting results from Salford. They say it could be up to 18 wks.
My tinnitus is permanent now and my head does not ache much, but it feels full like a head cold. I keep busy and walk my dog twice a day. Ignoring everything and really staying positive for my children. I have not discussed anything with them to date. I just can't!
Sorry for long post. Just needed to say what's happened to me
Lozx
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Lorosco62
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Hi LizYou really sound like you are going through it. I hope you feel better for sharing but please speak to your children about your concerns so that you can get some daily support from them, even if its just a check in phone call, I'm sure that they'd want to know.
The MRI results are the only way you are going to know if it's an AN or not so please chase the results up with the hospital. I know all waiting lists are different but my MRI was the same time as yours and I've had the results back so you wouldn't be chasing excessively early.
Hope you get the answers that you need soon. Well done for staying positive X
Hi Liz, I’m in Scotland and luckily got my results through pretty quickly once I had finally had my scan - though that took quite a while. Am now on watch and wait for my AN. I told my kids early on as I felt they should know and it is easier if they know why you are not your usual self. I find it hard to pretend!! I have balance issues which at times are pretty obvious. But I do find it helpful that they now know. I hope you get your results soon and am glad to you are trying to stay positive - it is not easy. Take care
Thank you for taking the time to reply. I think everyone handles the news differently. Once l get my results l'll have to think more about telling them . It's just a bit of bad timing. I help with school runs as my daughter has a new job and a sickly baby. My adult son has learning difficulties, and will not take it well, and my 14 yr old will panic as l am a single parent. So l'm leaving it as long as possible. In general they don't like to acknowledge me getting older.So I we make light of it and laugh about my garbled hearing and brain fog. I'm not a person that lets things get to me. But in the end if it is an AN, then they will all rally around and help. We are a close family. Good luck on your journey
I read in the paper that they 'send' the MRIs/xrays to Australia to diagnose as there are not enough radiographers. I had an MRI in Dec and my results are in June. I love the nhs but couldn't the specialist ring us at home with results if it is watch and wait?
With modern electronic MRI outputs (rather than the old fashioned films, it doesn't matter where in the world the scan is analysed, indeed, the time differences could mean you get an answer from Australia quicker! Either way, the Consultant, rather than the analyst is likely to want to pass on/discuss the results with you. I suspect that the main reason to have this appointment face to face is that if it turned out to be bad news, the discussion is easier that way. It also looks better from a PR point of view in such cases. For example certain newspapers might create sensationalist headlines like "My scan showed I needed major brain surgery but the consultant just told me in a 2 minute phone call"!
Well I just had an MRI on Friday and my next appointment with the consultant is in June. The appointments last five minutes. If my AN is not growing it would be nice to know this and skip the wait time.
Hi whitefishbay. I totally agree. I'd like to know one way or another too. l have many symptoms of an AN with the most worrying being my eyes and crippling indigestion. If it's not due to an AN, then what is going on.
Have you seen a good opthamologist? Or mentioned to the ENT team? The reason I knew to go to the A&E when my hearing went was due to PMR Pro. This forum is invaluable. You have to advocate for your own health so do you have a good GP that could help with questions and also maybe push for speedier appointments?
Maybe have a look at this website in the USA. They have virtual meetings where people can ask questions. This might help. I have not done it but if things change I will. anausa.org/programs/support...
Sorry to say l'm still awaiting mri results from Jan. I did go to see my gp 2 wks ago to ask if she could chase up the results. I told her l felt really unwell. She looked at me as though l was wasting her time and asked me nothing. I felt absolutely brushed me off. So l'm nowhere near getting any help or appointments with an optomologist or ENT.
Then end of last wk l received a text to say a request had been sent to hospital by gp. So l hope to get results soonish!
In the meantime, l have made an appointment for an indepth eye test next week.
Boy you have been through the mill. I am pretty lucky as I am fit to work (in two secondary schools) and everyone puts up with my deafness (favourite expression "what?"). My head also feels full /muffled and going out to eat or out to supper difficult if the accoustics are poor. I am so grateful for Netflix and subtitles. Hang in there. Good to vent.
Finally, l got a letter with an appointment to attend for a CT Temporal Bone. So l presume there must be something of concern. There was no mention of the results from the last scan. The 2nd scan is next Friday eve....so lets see! Gosh, it seems such a long drawn out process. But glad to be going in the right direction.Loz x
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