8 replies to this topic

[bruised1]

: Hi,i"m new here,,had a little look round think i"m going to get lost a few times but hope to sort myself out in the near future.
After an R.T.A. 10 years ago i damaged my spine..lack of info from hospitals and own gp.I tried to carry on with my driving job..alas after popping ibruprofen like smarties, i made doc tell all,Forced the issue with specialists.and found out the sad truth..although some days i can do things some i cannot.
This is a very brief summary..as so much heartache getting to this stage as i daresay all of you have encountered,

[disjointed]

Sounds like my story only more severe! In my case, 3 separate freak injuries (was I meant to have a bad neck or what!) followed by years of misdiagnosis and resulting treatments that did more damage.
So, what's you situation right now as far as diagnosis/prognosis and limitations/pain?

[bruised1]

Hi I understand what you mean the best part was two hospitals putting my files away without contacting me..Most of my trauma is at the top. With so far occasional free for all in the legs.
the latest update is they also thought i had Parkinsons so a brain scan was taken,found a brain but no damage.
they now say it"s ET which is caused by the discs .but they are not sure.Spine specialis has given me a long list of do nots..
But if i feel up to it will do a little/rest little more etc. in saying that though the worst is when i can"t even lift my cup of tea.(sob)

Edited by bruised1, 15 September 2008 - 08:54 AM.

[disjointed]

bruised1, on Sep 15 2008, 04:52 AM, said:

Hi I understand what you mean the best part was two hospitals putting my files away without contacting me..Most of my trauma is at the top. With so far occasional free for all in the legs.
the latest update is they also thought i had Parkinsons so a brain scan was taken,found a brain but no damage.
they now say it"s ET which is caused by the discs .but they are not sure.Spine specialis has given me a long list of do nots..
But if i feel up to it will do a little/rest little more etc. in saying that though the worst is when i can"t even lift my cup of tea.(sob)

I spent years not being able to lift a cup of tea! I remember precisely wanting the tea but not being able to do it! I skipped meals left and right, stopped drinking water to avoid having to get out of bed to use the bathroom... I was a wreck. Years later they discovered the disc inflammation, and epidural steroid injections are what got me to hold my teacup again
I'm glad you have no brain damage. Did they suspect Parkinson's because of tremors? For years I had what they call intention tremors -- shaky when you try to move. Parkinsonian tremors are more shakiness when not trying to move. I also have random spasms and twitches in my arms and legs, more tonight than usual... hence 5am and still not a wink of sleep! grrrr!
I hope you keep advocating for yourself and demanding tests, changing docs, researching new specialists and treatments... I had no help from the GP whatsoever, my orthopedist was the one misdiagnosing me and sending me for manual PT treatments that exacerbated the instability throughout my neck... long long journey. You have to become your own advocate, researcher, everything... it's so hard. But, I got functional again (albeit with chronic pain and lots of limitations). Just remember, I finally could hold my teacup again. Keep at the healthcare system until you get your teacup back.

[bruised1]

The shake is permanant although at the pain management clinic he noticed, after a couple of movements that brought on the pain, the shakes got worse.
The worst out come i had recently..i woke at 2am thinking i was having a heart attack.o/h phoned Em doc. who actually read my records told him to give another 2 ibruprofen..if it didn"t ease in 15mins call an ambulance fast..luckily it worked..next morning the nice gp (yes i found the gp i was not seeing was marvellous the one who i"m registered with hopeless) called round he said it was to do with my back problems..i asked how will i know the difference he said do as last night if 2 ibruprofen don"t ease it at all call an ambulance..Never thought it would do that ..more finding out for myself..

[cate]

Hi bruised1.Welcome to the site, you wll find humour and good advice on here, help when needed. Your situtation sounds very similar to my daughters, when they did start to investigate they thought she had MS, Once they had the scans they knew otherwise. and help was immediate, but it took a long times before investigating. Hope things improve for you
Cate

[bruised1]

Thank you both..It is just so depressing when all these so called professional people say you have this or that and don"t reallly have the time to explain any thing..
I am so glad i found this site as i have been sitting out here feeling no-one knows or understands my predicament..
As i said most of the trauma is at the top end and because of it being a hidden injury people just don"t seem to understand.They just think you are being lazy..I had a little old lady once in a shop drop something she asked me to pick it up and got very ratty when i said i couldn"t..
I guess it varies slightly with us all but hopefully i am now at the right place to learn and share experiences..

[Slowlegs]

bruised1, on Sep 16 2008, 05:38 AM, said:

Thank you both..It is just so depressing when all these so called professional people say you have this or that and don"t reallly have the time to explain any thing..
I am so glad i found this site as i have been sitting out here feeling no-one knows or understands my predicament..
As i said most of the trauma is at the top end and because of it being a hidden injury people just don"t seem to understand.They just think you are being lazy..I had a little old lady once in a shop drop something she asked me to pick it up and got very ratty when i said i couldn"t..
I guess it varies slightly with us all but hopefully i am now at the right place to learn and share experiences..

Hi bruised. Yes, you are in the right place. I joined a while ago and now come back every day. From your posts it sounds like you aren't in a chair either. I know what you mean about hidden injuries. I am walking again but it is like the people responsible for helping pay for my healthcare either look at me and think I am a hypochondriac (I still get a lot of paraplegic type health issues) or have some sort of "don't help this guy" note on my file. I have even asked for copies of my files, just in case.
Good to see your post though and welcome. I am sure there is something on here for you.

[bruised1]

Hi there..I do occasionally have to use a chair as long distance walking is a no go.so i do tend to stay on the flats for short walks..
i do have times the lower back goes and completly stop my legs.but as to yet they are only occasional.thankfully as the first time i had the Em.doc out he injected a muscle relaxant..the spine specialist has said NO to these as it could fuse all the discs so now the chair travels in the car whenever i go out.
It can be very frustrating these hidden disabilities there"s a lot of talk about educating AB!s but it seems to get pushed back into the drawer for another day