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New Neuro number 3! Help please

My GM consultant has refered me back to a neurologist I said I was only willing to go if it was someone who thinks outside the box. 

I was willing to go private, as the neuro I was referred too, had long NHS waiting list and we have Medical insurance. 

But I was phoned yesterday to say I could have an appointment tomorrow! I wasn't expecting it to be that quick, and just the thought makes me feel ill! 

I feel I do not want to be humiliated and told yet again that there is nothing seriously wrong with me when my life is slowly deteriorating. I feel I am useless at conveying my symptoms as I do not have the the vocabulary to make myself understood. I also find, I do not think fast enough on the spot! or I think thing but don't say them, why I don't know I'm just rubbish at this situation. 

Can anyone help me get over this? & fast! 
Twist 

My top tips:

- write everything down, very concisely (this will act as a reminder, but you can also hand a copy over after you've talked through it)

- arrange to have someone come with you to act as another pair of eyes and ears but also as another mouth! (Make sure this is someone who will be calm and firm with the neuro.)

- coach this person today/tonight on what the essential things are that this neuro needs to know and what you need to ask

- start the appointment by explaining that you aren't good at conveying your symptoms and that you can't think quickly so he/she will have to be patient with you. Any time the neuro isn't allowing you time to think or to find the right words, your friend needs to intervene. You could arrange a "help me!" signal with your friend beforehand.

 

Remember that neuros are NOT gods. You are a CUSTOMER - you are paying for his/her time. If the neuro starts to get ready to get up and get you to leave and you're not done yet, say, "Before we finish, I wanted to say/ask/add......." or get your friend to say, "I believe X has a couple of other points she wanted to make." And don't get up! With any luck you won't need to do this, but best to be prepared!

 

Good luck, and let us know how it goes :-)

 

Karen x

 

 

hi

i know exactly how you feel, im like that too!!

 

i made a list to give to the neuro but i know for a fact that he didnt read it.  the very first item i put on it was eye pain and discomfort,  at the end of the appt i asked him why i was getting the problems with my eyes, he said you havent told me you have eye problems.  i said its at the top of my list!!  but i still allowed him to give me no explanation!!

 

so lists are good but as karen said dont just hand it over, go through it with him/her yourself first.

 

my problem with the list as well, was it was just bullet points without dates or how it actually affected me and i think that maybe could be looked at as if i had just read it from the internet and  my memory problems  probably made my story seem vague and not consistent.

i'm still in limbo after being ill for 7 years.

i really hope your appt goes well for you.

let us know how you get on.

 

best wishes

mandy  xxx

 An update on what took place at this unexpectedly quick appointment. (48 hours notice) 
Thank you for the advice I went along with time line in hand & points I needed to make 

He was very plesant and wasn't like the last neuro I saw - he's done the tests and that's it, he seemed more prepared to help with the problems I am having at the same time as continuing to look for a reason as to what is causing them. 

He felt that I had Dystonia in my hand and foot , as well as the Blespharospasm in my eye. I had hyperflexia unilaterally, an abnormal plantar reflex on my right foot. Weakness in my left hand & right foot. He meantion some other thing that was abnormal but I didn't reconise the word or remember it! 

He is arranging Botulinum injections for my curling toes and feels the orthrotic ordered probably wont work. He has writing back to my GM consultant asking him to arrange a full spine MRI, and is going to go over my notes to look at the test results and see if he can put the jigsaw together. 

So I feel generally pleased with his attitude. The only downside was, I pushed for a 3T MRI, but he felt it would not show anymore than a 1.5T. Although when I pointed out the other neuro's attitude to "seeing thing that arnt really there" he also felt it was a stupid comment when we are looking for something we can't find! He just felt that it was unnecessary to travel the 200 mile round trip as the machine in our hospital were just as good. Even though I don't mind. 

I felt that he couldn't do it as it would be unloyal ( unethical ) to the radiolology dept. he did say to ask GP. I need a referral and then our insurance will pay. 

I didn't need my notes I think the fact I had written it the night before everything was fersh in my mind. 


So next up uro-gynaecologist next week. 
Thanks again everyone 
Twist x

It certainly sounds like he's on the ball. He's wrong about a 3T scanner not showing more than a 1.5T scanner, but a 1.5T scanner is not the end of the world - it's more important that the settings are good. If you can, you could try and ask your GM consultant to request a 3mm (or less) axial STIR scan of your whole spine (as well as whatever else is standard). 

 

Good luck next week :-)

 

Karen x

   It does look hopeful. but I have been in this situation before when the first appointment goes well and then it's all downhill. 

At the moment I have just come of Cymbalta having had some nasty side effects, but this has now increased the burning sensation in my Limbs & head. I am stressing over the appointment with the uro-gyny next week and just finding that at the moment it's all-consuming. And this is from some one who just does not do stress. 

I see the GM consultant in 2 weeks so I should find out more then. I going to pester him about a 3T scan I have decided.
Thank you for your support, 
Twist