I'm here again

New diagnosis and before diagnosis
1

Hi all,

I was here a few years back when I was having acute neurological symptoms of falling, parasthesia, spasticity and urine retention. I saw a neurologist who had the biggest ego I’ve encountered in a consultant and I have seen a lot of them from various places. That doctor got into a raised voice argument with my carer who was just trying to be my assertive side. He referrered me to a health psychologist (who declared me sane) after saying my spinal Mri was clear, then refused to see me again.

I moved on, my physical health has gradually deteriorated since then I have regular falls which injure me badly because I don’t put my arms out for some reason, and I have to catheterise four times a day, my handwriting is no longer legible but I just put up with it, I found out last year (from a different consultant) I actually had two ruptured disks on that Mri, I just put my symptoms down to that. Until November when I started tremoring in my hands worse than I’ve ever had before and I began to feel really unsteady while walking despite falling I usually felt quite grounded, But now after walking ten minutes I feel really unsafe and every step is an effort. My energy has been feeling like I’m hungover all the time, headaches (not migraine though) and feeling sick in phases. I apparently don’t speak clearly, my voice slurs at its worse. As well as numbness and tingling in my back. I’ve had some of these before but not this bad, I’ve never been to the doctor about it due to fear of judgement again. Just usually hide at home and recover. But I was called for a health check with my gp and she did a few tests and decided I definitely need to see a neurologist I’m seeing one who has a specialism in MS. Which brought me here.

I’m terrified of seeing the neurologist again, I do want answers, and help, I just don’t want more judgement in my records and I don’t know what to expect. Is it okay to ask for a second opinion well third opinion if you count two years ago.

How do you remember what you want to say? I took a list with me last time but they didn’t like it and it causes most of the problems, I wasn’t specific enough. I’m more articulate now, So that will help. But I don’t want to come away feeling belittled like last time.

I don’t know what I want but any advice would be very much appreciated in the run up to the appointment. Thank you, Meg.

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hi little sparrow

take someone with you to your appointment.

someone to help you remember what you want to say.

someone to help you remember what was said by the neuro.

i get really mad when i hear of the dreadful, rude neuros some of you have to put up with.

if this happens again contact PALS to make a complaint.

you ought to be able to trust your neuro.

good luck

carole x

3

Hello Sparrow

Are you seeing a different neurologist than the horrible person you saw before? You seem to be implying that by saying you’re seeing an MS specialist this time.

You will hopefully find it’s quite a different experience. Most doctors are reasonable human beings and will answer your questions sensitively. (Though obviously not all as many people have encountered obnoxious neuros!)

I’ve found that taking a list of questions with me is a good plan, and I tend to do that regardless of who I’m seeing, GP, neurologist, any other doctor. And in general they are happy for me to refer to my list of questions.

As Carole said, if possible take someone with you who can help you to remember the answers you’re given. Often, we see a doctor, ask all the right questions but are utterly confused by the answers we’re given, or immediately forget the answers. So if the person with you knows what you want to get from the appointment, they can ask for clarification on your behalf if something is said that’s a bit confusing.

And again as Carole said, if you have a really bad experience again, contact PALS. It stands for Patient Advice and Liaison Service and they exist in order to make sure patients get decent treatment.

It does seem like you’ve had a pretty horrible few years and seeing a good neurologist is just what you need.

Sue

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Thank you both its really kind of you to reply, it is a different Neuro this time around hopefully. I’ll take your advice and use it seeing what you’ve written out has started an action plan in my head now. A question sheet is a fab idea too, I never know what to ask on the spot! I’ll look up my local pals just incase too. But hopefully this time it won’t be needed :).

I really appreciate it that you replied,

Meg.