17 replies to this topic

[allister]

Hi,
Some of you know the hard and long battle I have been having with NO help from my gp.
Well, After going to Stoke Mandeville on the 14th july, and being placed on a waiting list, I got a call last wednesday midday saying that there was a free bed if I wanted it, and if fo get there asap !!!
y i p p e e e e e e 1

had a load of fresh mris again, this time all of the neck, looking at the C4 C5 narrowing and bulge they have found.
Sould get the results on monday.,

On Friday, had my first gym session, and I was stood upright for the first time in 13 mths !!! Took them 4 attempts with the stand aid, cause I felt sick, ads attack then the pain in the back. knees, hips, neck!! But I managed to stay up there for 5 mins !!! yehhhh..

As it that wasn't tough enough, I was then strapped onto an assisted cycle for 15 mins and 3km !!

I'd forgotten that pain could also sometimes feel good to have !!

Apat from the food, everything else is good !! Looking forward to the next 4 weeks there..

Will let you know what else I acheive !!

Al

[greybeard]

Great news Al.

[Stickman]

Thats awesome, just have someone smuggle you in some good food so you dont loose too much weight like i did!

[qbounce]

Great news. I hope they get it sorted for you with the test results. Happy hand cycling!!

[Stand]

Very good news! Best of luck to you.

[Trinity]

Haha the food is terrible, it's the only place I know that can burn peas! On the plus side there are many takeaways that will deliver to Stoke!

Keep up the hard work
xxx

[edlee]

Glad to hear that you are finally getting a little attention from the right part of the medical community,,, bout time.

Institutional food is almost universally bad,, but as was suggested above,, a little takeout will help you get through it.
ed

[cas]

best of luck with it- and happy handcycling - bet it felt fab to be vertical too!!!

[allister]

So glad that you can go home at the weekend, Headed straight to my local marks and spencer food hall and bought 6 rready meals for next week !!! lol.... (although it was a 520 mile journey for gary, Home - stoke - home - stoke - home!)
Trin, How do they burn peas? They are black bullets ! ! ! Lol...

Oh, I wasn't hand cycling, it was the feet that were velcro'd to the cycle, Thought it was gonna rip my legs of at the hips ! boy did it hurt !!

Ward round in the morning, (monday) nervously awaiting the Drs visit.

[DellFan]

allister, on 08 August 2010 - 11:06 PM, said:

So glad that you can go home at the weekend, Headed straight to my local marks and spencer food hall and bought 6 rready meals for next week !!! lol.... (although it was a 520 mile journey for gary, Home - stoke - home - stoke - home!)
Trin, How do they burn peas? They are black bullets ! ! ! Lol...

Oh, I wasn't hand cycling, it was the feet that were velcro'd to the cycle, Thought it was gonna rip my legs of at the hips ! boy did it hurt !!

Ward round in the morning, (monday) nervously awaiting the Drs visit.

Very happy for you! Keep working hard and make the most of it.

Best of luck!

[Tetracyclone]

Blessings on Gary.

[ClaraTaylor]

Everything crossed that your journey back will be nice and smooth and indeed that your ward round will be most useful.

(Will reply to your PM later xx)

[S&W Winger]

More hugs to you...and to Gary...

[allister]

Ward round still left me waiting for answers.....
More scans requsted and other tests too before the Dr will comment on them....
More physio, more standing, more assisted cycling, and FES on both legs and lay watching my feet wave at me !!!!

Edited by allister, 11 August 2010 - 06:29 PM.

[allister]

They are trying to take me off free drainage and back onto a flip flow, but as per usual my bladder has other ideas !
Terrible leg spasms after only 30 mins on the flip/flow, but when drained, the bladder decides to make sure its really compleatly empty and wrings its self out with vicious spasms too! Can't bloody win here can I !!! lol...

Had to abandon the physio class today as I could not sit up straight, cause if I did, i'd spasm. Poor physio had to bend my foot back and put all her weight on the knee to try and stop it.

Reluctantly had to have bed rest..... feel like i'm wasting precious time laying here..

[ajl338]

I am glad that you eventually have got help, I feel like there is time for me yet, i'm only 5 years down the line not as long as you. I can completely believe that you have hundreds of MRI's and that noone found anything wrong. Because they only ever find what they are looking for. Im my case they did some MRI's looked for MS. Didnt see the lesions and said there was nothing wrong, what they actually should have said was no MS.

I'm still fighting to get a diagnosis. I sent all my scans to a doctor in america who specialises in non traumatic spinal injury and got sent back about 2 pages of points i should be asking about in relation to my MRI scans but the british doctors had picked up nothing. I am in the process of getting a british doctor to agree with the american guy and even investigate.

Somehow haveing an injury confirmed or even getting a different conformation makes no difference to your every day life as far as the medics are concerned but it makes a different to help you feel in control and able to forgive yourself and accept the things you cant do.

Good luck with the next few weeks

ann

[Tetracyclone]

allister, on 11 August 2010 - 06:37 PM, said:

They are trying to take me off free drainage and back onto a flip flow, but as per usual my bladder has other ideas !
Terrible leg spasms after only 30 mins on the flip/flow, but when drained, the bladder decides to make sure its really compleatly empty and wrings its self out with vicious spasms too! Can't bloody win here can I !!! lol...

Had to abandon the physio class today as I could not sit up straight, cause if I did, i'd spasm. Poor physio had to bend my foot back and put all her weight on the knee to try and stop it.

Reluctantly had to have bed rest..... feel like i'm wasting precious time laying here..

Just a feeling, Al. Things must begin very slowly for you. Your muscles are so out of condition they will scream and spasm at any excuse. Honestly, my bladder spasms more as time goes on, even though I get stronger. We cannot win, but we can certainly fight!

[allister]

ajl338, on 13 August 2010 - 04:04 PM, said:

I am glad that you eventually have got help, I feel like there is time for me yet, i'm only 5 years down the line not as long as you. I can completely believe that you have hundreds of MRI's and that noone found anything wrong. Because they only ever find what they are looking for. Im my case they did some MRI's looked for MS. Didnt see the lesions and said there was nothing wrong, what they actually should have said was no MS.

I'm still fighting to get a diagnosis. I sent all my scans to a doctor in america who specialises in non traumatic spinal injury and got sent back about 2 pages of points i should be asking about in relation to my MRI scans but the british doctors had picked up nothing. I am in the process of getting a british doctor to agree with the american guy and even investigate.

Somehow haveing an injury confirmed or even getting a different conformation makes no difference to your every day life as far as the medics are concerned but it makes a different to help you feel in control and able to forgive yourself and accept the things you cant do.

Good luck with the next few weeks

ann

Hi Ann
Many Thanks for your words..... Seems like we're two peas in a pod here !

Your right when you say that ""......having an injury confirmed........makes a difference to help you feel in control..."" All I want to know is what the cause is, what can and what can't I do, and a prognosis. Surely with todays technology that isn't asking for mohamed to move mountains, is it? It sure seems that way to me ! ! ! !
Hope you to manage to get your questions answered, and never give up in your fight. I'm so glad I didn't give up and accept the lies being said about me.
Al