Spastic Paraparesis

LC in UK · #1 (**permalink**) 10-23-2007, 08:25 AM

Thankyou Mark and fuzzy.
Not getting a good service all round here with neurology whether private or NHS it seems.
Saw my GP yesterday and he didn't seem very proactive on the waiting times or on seeing another neurosurgeon.
Said he will write when letter from neurosurgeon arrives and get "creative with the symptoms". Think myelopathy speaks for itself.
I asked for physio to help get fit for surgery and was told physio's wouldn't take the risk with me because my condition is too precarious.!!!!
Definitely have to do a lot of groundwork here and will try for other opinions .
Be in touch
Lynette

LC in UK · #2 (**permalink**) 11-17-2007, 05:10 PM

Sent a letter today to the chief executive of the hospital asking him to explain why I have to wait 4-6 months for surgery to free the spinal cord.
Told him my legs are getting weaker, they nearly gave out yesterday and that my GP and ortho consultant have written stressing the urgency.
These letters obviously haven't seen the light of day.
I came home this evening to a letter from the neuro clinic changing my first clinic appointment from January 7th 2008 to ................................
March 3rd.............They cannot be serious??
Gloves are off now and I have a lot of fighting to do. How depressing.

fireyangel76 · #3 (**permalink**) 11-18-2007, 06:57 AM

Lynette,
I can't believe you have to wait so long! So sorry you still have those wobbly legs! I'd say to keep bothering them and complaining and maybe you'll have some luck that way. There just has to some way to move that up! I just don't understand the NHS and the fact that private pay go first and see the same Doctors! Just seems like a huge conflict of interest!
Don't get depressed....just keep the pressure on them!
Good luck and I'll be pulling for you!

LC in UK · #4 (**permalink**) 11-18-2007, 07:46 PM

Thanks a lot Betsy, someone needs to get a handle on this and quick because it's official complaints and MP next.
This is becoming neglect pure and simple. Difficult not to feel down but the more proactive I can be the more chance I'll have of staying sane!!
Hope things are good with you?
Best wishes
Lynette

fireyangel76 · #5 (**permalink**) 11-19-2007, 03:37 AM

Lynette,
I am not doing so well with our medical care here. I am also having cervical issues and pain down my left arm to my hand, intermittantly. I am far from having big problems such as you are having. I had an xray and I don't have much space between C6 and C7. I can't seem to make them take me seriously. I also have tendonitis in both shoulders. I think that is from using my arms for so long to move myself around and pull myself up. I am still not able to bend with out pain and if I sit for long my feet get pins and needles and shocking sensations. I also have started to get more frequent pain down my legs. I need to get pushy and demand new MRI's and other tests, etc. It is just a shame that i have to ask for things that doctors should be suggesting I do. I mean they are the ones with the medical degree! I think I'm getting the MD burn out attitude. It's that attitude where they just give up trying to help you because your not fixed by the things they have tried!! How I would love to be fixed..at least to be able to vacuum or sweep, or even go grocery shopping. I mean be honest...am I asking too much from the medical community in this country?

fireyangel76 · #6 (**permalink**) 11-21-2007, 03:06 AM

Well today is my lucky day I suppose. I took a fall on some steps in my house and hit my thoracic spine so hard on the edge of the step. Lucky because it wasn't my lumbar spine with the dynesys. So now I have a compression fracture in my t-spine. And to think I don't have wobbley legs..just no coordination, but I was born that way! I feel so stupid!

So here's to valium, vicodin, phenergan (for nausea) and flexeril also!
Happy Turkey day to everyone!

LC in UK · #7 (**permalink**) 11-21-2007, 12:43 PM

So sorry to hear you've fractured your spine Betsy on top of everything else.
Just what you don't need.
You were doing reasonably well not so long ago too. I really hope the doctors do something soon to help you. Painkillers are essential at the moment but I know you want more done for you than that.
I'm very fed up too being left like this, not being able to walk any distance and my outpatient appointment being pushed back another two months to next March. Just ridiculous.
It all comes down to money I think, the NHS in this country isn't doing what it should.
We all have a lot of fighting to do but it's so depressing. And there's a lot of us all in the same boat I think.
I wish the very best for you and hope to hear some better news soon, take care please.
Kind regards , Lynette