Getting the right diagnosis.

[Emmababyk]

Hi all. How do you all get diagnosed with such detailed conditions. I have only seen a specialist once who sent me for a mri and then a physiotherapist. Who gave me tests of watching a red light move along and where i had to be strapped in a harness. And the floor moved. I have supposedly got bppv. But i am constantly dizzy which doesnt fit the diagnosis. I have tried an eply manouver but theres no eye flickering showing no crystals. My arms and upper body is agony all the time and my balance is terrible. How do i know if it is something more going on. My memory is so bad. And non stop migraines.

[Shon48]

Have you been diagnosed with an aneurysm? 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿Shona

[Emmababyk in reply to Shon48]

No i had contusions on my frontal lobe. 10 yrs ago. I feel its getting worse. Dont know what an anurism is

[Emmababyk in reply to Emmababyk]

I dont think i have that. I dont understand how i am so dizzy. Is it part of a brain injury and not bppv. I dont know much about conditions. Or how to find out if theres something going on.

[eddstjohnoneday]

hi love i have all them symptoms i after 5 or 6 or 7 years meaning ive so many mri and cts

consultant s sayin in letters that bacically i complained of realy going dizzy eletric shock s

so i had a severe trauma to frontol lobes 8feb 2014 but id been saying to everyone i need a scan so that was up to asking doctor for scan 2012 to 2013 i was wobbly thuds in brain

really dizzy like i was going to pass out so iwas pushing asking begging the 2012 to 2013 for another mri i wrote a lot down so i had severe trauma between 2012 till i eventualy got scan feb 2014 8th so my doctor told me severe trauma eddie i said i told you something was wrong with me brain then had another mri april 24 2014 i was getting worse and dye mri and said you have had another major trauma to frontol lobes i had to find out google

double inpact syndrome .then i have a letter of a professor saying i had a healthy normal ?

brain in 2014 ? i pass ed out 2 years ago taking a e so they done another ct scan and it say s

the results first noted severe contusion first noted as far back 2011 ? and no one has told me nothing hiding truth thats why now . ive learnt more of our angels on helpline

and our family here lov im the same all i get told were i live is nothing we can do ?

eddie i no how you feel love im really feel more for you suffering love than me x

i would going get another scan a secound opinion different consultant different hospital

through headway angels . i really feel sorry for you its horrific i no x but defo have anothe scan different hospital different brain consultant hug x eddie

[Emmababyk in reply to eddstjohnoneday]

For you to have a double contusion was that first diagnosis a misdiagnosis or did u have another trauma to your brain

[eddstjohnoneday in reply to Emmababyk]

sorry emma didnt see this love no i passed out 23 1 2017 no one knows why so i had ct scan and it said previously frontal head injury unwittnessed fall today contusion right forehead more confuse than normal but at the bottom it said previous frontal contusion first noted asfarback as 2011 ?

then between 2012 to 2013 i was saying to everyone my doctor nuroligist keep on going dizzy when i bent my neck back or getting up of chair electric shock s so eventually got mri feb 08 2014 severe trauma to frontal lobes then i got another scan 28 april 2014 and said ive had another severe trauma thats double inpact syndrome

i got told may 2018 that ive still got a fractured scull ?

but have a proffessers letter saying healthy brain 2014 and a neurologist s saying the same ? ye scary but what can i do thats why emma push for mri up to date eddie

[cirrus]

Sorry to hear you are having so much trouble Emmababyk it cn be reallydifficult to get help sometimes. I only had luck eventually due to going back to doctors again and agian over the years. But also as I had moved around a lot I got to see different GPs and finally got one who would consider doing tests. But it took over 10 years from my injury to get my ears/balance looked at and see a neuropsychologist. It was really, really hard.

I still have some quite notable symptoms I woul like investigated but I am not sure that it will ever happen.

Maybe ask to see a different GP if possible? And maybe go to your local Headway group as perhpas they will be able to help you know what to ask for. I also wish I alswyas had someone with me at my docotrs appointments as it is easy to get cofused or distrcted and come away without having said what I wanted to say. Headway or an advocate may be able to help you with that.

Phew. Its not easy is it. Keep going as best you can x

[Emmababyk]

I feel like its getting worse. My short term memory is awful. Just making a tea i go to put a t bag in and theres already one in the cup where i already put one in. Then same with the sugar. By the time i have put the milk in i then cant remember if i added the sugar and have to taste the tea. I will then end up walking off often leaving my tea in random places and going mad looking for my cup. This goes on thru the day with everything i do. I repeat myself up to 4 times and can be as enthusiastic as the first time i tell someone something. I dont know i am.like this. Everyone says you told me that emma. Or you told me twice yesterdayn i feele stuck in a world thats not me anymore. Its been took over by someone who has lost the plot. I have no emthusiasm to do anything. My hobbies i had loads i dont want to leave the house as i struggle talking and walking. I walk like im drunk. And knock into stuff round the shop. I dealt with things after my crash by doing drugs to escape being different i have been clean for 4 years now. I am so exhausted all the time i just want to sleep. I wake up and my arms are so painful constant pain in my upper body. I usually wake with a migraine. I cant get up with the kids. Theyre 13 twins. And get to school. I struggle getting up and get up about 1 2pm. So i am fresh for he kids. And use what energy i do have to cook a meal. On a good day i can do the hoovering and tidy round. When im round people its like i am in a bubble. Noise makes me jump and makes me angry. What is wrong with me i feel like knocking on the loony bins door and admitting myself.

[cat3]

Emma, have you phoned the Headway helpline for support/advice re. your condition ? The number is 0808 800 2244 (free calls/office hours). xx

[Emmababyk in reply to cat3]

Called today theyre calling me tomorrow

[Emmababyk]

Someone is ment to be calling me but that was a couple of weeks ago. They were on about getting me a social worker but i am scared incase they try and take my kids away.

[cat3 in reply to Emmababyk]

Who's the 'Someone' who's going to call Emma and who arranged for the call ?

[Emmababyk]

It was some lady from headway in leicester. Im going to chase them up this week. I notice you mention joint pain in your profile. Is tht similar to what im experiencing with shoulder and arm pain.

[cat3 in reply to Emmababyk]

Mine's osteoarthritis Emma from years of manual work. Do you have arthritis ?

[Emmababyk in reply to cat3]

I was diagnosed fibromyalgia a few months ago.

[eddstjohnoneday]

so sorry emma love for my reply to you love 3 days ago i look at it now and think i shouldnt of said all about me ishould of said i no how you feel love im really feel more for you suffering love than me x

i would going get another scan a secound opinion different consultant different hospital

through headway angels . i really feel sorry for you its horrific i no x but defo have anothe scan different hospital different brain consultant hug x eddie so sorry hug eddie x

[Emmababyk in reply to eddstjohnoneday]

Theyre phoning me tomorrow. So hope to have them come out to me. Do u have esa and a social worker. Ive been taken off esa onto job seekers. Im appealing tho. Its hard to know whats brain injury and whats mental health. My friend thinks i may have ptsd

[eddstjohnoneday]

hi emma love id say firstly our family here and angels on helpline were all here for you

day and night x always post or angels helpline i was under the brain injury service and ive had to get them back to stand up for me ive been fighting ss social for 20 years they were my social worker s and brain injury service andcfilled forms in done all the things i couldnt do headway are here for me. as well x lady from headway in leicester i would try and have the nice lady from headway there with you at any social security meetings love ive put deep heat in my mouth picked it up because it was next to toothpaste i always drop things

misplace things ive no taste or smell cant cry . id say its your brain injury love and i see great strenth in you making sure your kids are ready for school with so much pain fatigue

like me until i found our site here love i thought that i was loosing it for years like yourself

it felt no one understand s me and ye i had severe brain damage which made me very sad inside i was going to bed a lot i couldnt cope pain so tired then i found our family here and angels on helpline . like now emma and im sure all are family here would agree we all do the best each day love i dont hoover everyday i now from learning here our special site

youbhave kept so much inside struggling in silence now you can let it out and get the best support here family and freinds with us and helpline angels i think our family here and headway angels should be running the country always appeal to anything to do with your benefits with headway you are not alone all our family have had problems with social security benefits freinds family now ive learnt that through are site and helpline angels

take each day as a newday i no how hard it is im done in all the time love but in me trying my best and just trying to help you as best i can and anyone ive tried to help on site

makes me feel good hope it helps emma hug x eddie

[Emmababyk in reply to eddstjohnoneday]

Are headway good at identifying things. I dont even know what i am getting up to half the time to be able to explain it to them let alone know it myself. Esa are harrassing the hell out of me they lied at the interview they said i told them i cud go out on my own and went to appointments on my own. Thats so not true i dont leave the house on my own i go with my daughter. Especially shopping its really helped having that brain injury card. I can show it when i do my packing and the shop doesnt rush me then. Big relief. Thanks for your kind words. Do headway help with paperwork. Ive got a esa appeal. Im on half benefits atm.

[eddstjohnoneday in reply to Emmababyk]

headway will help a great deal in guiding you and support see if headway lady were you live or man im sure they would cometo meeting and assist you . defo get headway involved . ask doctor for another scan well if it wasnt for are site family angels on helpline that i found out i had a a fractured schull then when i asked my doctor she then told me your scull was fractured after 5 years of not knowing seek advise of headway hope it helps eddie emma