follow-up

[irismarie]

With thee bunch of letters that the specialist from Toulouse gave me I went to octor today (newish - seen him 3 times and not impressed) Had just started saying that the ALS had been confirmed when he got a private phone call and was all happy and went out of the room to continue the conversation. Came back eventually.

First request - to call Montauban and request urgent respiratory tests. Threw the paper back across tha table and "you can do that yourself".

Second request - blood test before I start on the rilutek.
"Can't the nurses do it at your house?"
"Yes but they said to ask you to do the first one as I was already coming to see you today."
Big sigh, "OK, but you will have to take the samples to the laboratory" N,a ow the nurses always put them straight in their special postal system, so I told him not to bother.

Third request - a prescription for tha ambulance to take me to the next appt at Tououse with the specialist.
"What does she want to see you for?"
"a follow up"
"That does not qualify for an ambulance"
"Yes it does The ambulance drivers have already told me to tell your secretary to phone them as she seems not to understand the procedure and I have been twice already with them"

Follows big argument when he dared to say, "I don't know why you are complaining. You hae your diagnosis, I'd have thought you'd be content!"

Is he joking or what? Just been told I hae a disgusting killer disease and I ought to be content?

Anyway, he finally gave me the script for the ambulance but put as cause Ascending Spastic Lesions so apparently he does not even know what ALS IS§!

I cried. I am fed up with crying from anger and frustration. When will this go straight
ahead?

So guess what? Looking for ANOTher NEW DOCTOR;;;;;;;;..

aBSCESS bit smaller but dentist wont touch it till next TUesday.

Ah well,; it's only life

 

[sanderson]

I am so sorry that you have to endure all these ill educated, uncaring health professionals irismarie! Having this disease is diifcult, challenging enough without having to deal with incompetence. Please know that there are some good health professionals out there and my hope is that you will be able to connect with them so you can focus on you rather than on fighting the systems. I hope your day today is a better one!

 

[indigosd]

oh my sweet soul, I just hate that this is so ongoing. I have an idea! Maybe we could take up a collection from your forum family, hire Vincent and he could go to this sob and and and and...well, leave it to your creative imagination. LOVE YOU I love your REVENGE story :] A few names that I would like to add.

 

[joelc]

UNBELIEVEABLE! I am so sorry you have to endure this idiot.

 

[abbas child]

IrisMarie, "Ascending Spastic Lesions". Amazing. I want to remember that one. I'm very glad the abscess is slowly getting smaller. That's encouraging. I find it very hard to say what I'm thinking, but I love you, as we all do. I do hope your home and flowers give you a measure of peace while the weekend marches along.

 

[brooksea]

Sounds like he's a "Condescending Spastic A*****e!"

 

[handinhand]

I wish you would never have to see that dr again?.. How hard is it to find another? He is nothing short of a quack...I wonder if you could put a call into the specialist and tell her of his nasty response?.I bet she will not like how he responded to her requests...I would start recording his conversations ?.. This is abusive. Love u so and hate the way you are being treated.....big hugs ,Linda.:

 

[indigosd]

cj-that was soooo stinkin perfect! You go girl!

 

[rose]

I just keep remembering watching Michael Moore's Sicko, and how happy all the French folks he interviewed were with the medical system and providers there... I second what CJ said.

 

[t34gib]

Unbelievable, I thought that France was number 1 in health care? I hope you find a Dr. who is understanding and compassionate. You do not deserve this. I pray you find someone who cares.
NancyS

 

[hopeful warrior]

I am sending loving and peaceful thoughts. I am so sorry for all this negative drama you've had with these doctors. It is truly a crime how you have been treated. What a couple of idiots...(and I mean that in the nicest way...)

 

[irismarie]

This was only th third time I saw this doc after changing from the last a**hole. I shall change again immediately.
THE fRENCH SYSTEM HAS CHANGED IN THE last couple, three years. THEY (idiots) decided to follow the UK system fo some strange reason. It WAS much better before. But what I am getting is sheer ignorance of the disease.

Unfortunately I cry too easily and cannot answer back cos of crying. My carer is the same old same old who never ever speaks up for me. So I can never say those wonderful stinging comments that are taging thro my brain. tHO NOTHING IS as good as CJ's.
I shall cetainly report back to the ALS specialist and suggest she starts an education campaign in the medical world.
Thank you, all of you.
The carer has also chosen this moment after a few months of kindness, to go violent again. (For the story tellers I went to find V last night but he was not home)
So all in all not he best time. Still, my daughter comes over on the 18TH and my son on 29th sogood things to look forward to.
Much love, ohn HOW much love to you all/ I feel I could not continue the fight without you all at mmy side. Thank you

 

[abbas child]

V is here, Iris Marie. He's very, very hungry. As he also can speak as well as bite, we'll get our thinking cap on and respond asap (spy language used here). I hope you're presently taking a nap followed by a bubble bath, as it's time for you to breathe and relax.
I love you dearly and so does your friend in Irish Wolf Hound disguise.

 

[irismarie]

Booohoo cannot take a bath only a horrible sit on thing across the bath where I need help. How I should LOVE abubble bath........;;

 

[Twinsmom]

Oh Iris Marie-I'm so sorry you are dealing with such ignorant medical "professionals"...ughh it hurts my hands to even type that!
PLEASE, consider sharing with your children your situation with your care giver when they are visiting, so they can help you find someone who will support you with the love and respect you deserve. If you were my mother, I would be CRUSHED to find out you were suffering with an awful care giver and I didn't help you.

Hope you get some rest and enjoyment in your day...Oh, by the way...my painting came in... I LOVE IT! Thank you, thank you, thank you!
Love,
Melody