Tuesday, January 27, 2009

What a way to hear diagnosis!!!

Still can't believe it but when I saw the neurologist for the MRI results in July 2006 we waited for one and a half hours and then in five minutes were told that I had primary progressive MS and not to look it up on the internet.

I should wait til the next appointment when he would give me all the information on MS. Within minutes we were back in the hall, stunned, shocked and both crying.

The neurologist had not shown a shred of sympathy or compassion nothing
Months later the same 'kindly' doctor gave me a ten years out of date book to read.

Luckily we had looked it up right away and had not waited for the doc to tell us.

Cheek of the man telling me to stay ignorant, a very unpleasant man who was publically even nasty to his own colleagues.

Luckily I was sent to another hospital for a second opinion, finally saw the Professor
in December 2006 and got sent for another set of MRI's in March 2007 they were not ok and had to redone finally happened in June and after various hitches the good Professor told me in the autumn that I had abit of MS abit?!

I could not walk and already needed carers to wash and dress me and help me go to the toilet. A bit of MS!!!!!!

In January 2008 saw the Professor for the last time he was obviously not a happy man as he could tell me nothing about the course of my MS.

Then I had to see the first neuro again last April, by then I was fulltime in a wheelchair and he actually asked me how I had managed to get into a wheelchair so quickly!

Don't see any neurologists anymore as there are no drugs for me and they can't make a diagnosis something that makes them nervous and unhappy.

My GP is good which is a bonus, she is very supportive of me and Richie and it's good to be able to talk with her.

And Richie looks after me wonderfully well he keeps me happy despite being in bed since 21 August last year because of a nasty pressure sore.


Webster said...

I'm sorry to hear of your bad luck with unsympathetic doctors. It's just not fair. And is it usual for it to take so long to heal a pressure sore? It's been six months! Egads. Sending good thoughts your way.

Richie said...

What Herrad did not mention was the fist neuro looked just like a pig. Little snouty nose piggy eyes- if you were casting a pig in a movie he would have been the man- less time in make up.
Pressure sores are disgusting and do take forever to heal- the wound went from a mark on the skin and a hard bit under the skin to a six centimetre deep rotting hole in a day.
It is now healing quickly but I honestly feel shock when I remember that first day it opened up.
If you are a caregiver or recieve care move all the time. In and out the chair-lying down sitting up. If I knew then what I know now I would have been much more active and persistant in making Herrad change position.
We have been lucky to prevent the wound getting infected- this type of injury is life threateningly bad. Pressure sores are from the lowest pit in hell.

mortonlake said...

i was told by 1 consultant i had viral infection of spinal chord,dont worry about it,you too old for ms,come back in 2 years,NEXT.good job i had 2nd opinion.dont you see an MS nurse?i got an absolute gem.take care mort xx