Need all the advice/luck/prayers I can get.....
 

Hi everyone.... I feel a bit cheeky posting this as you all are having your own struggles but this time tomorrow I will be travelling 90 miles to see a neuromuscular specislist after 9 years of basically being told there is nothing wrong with me. As some of you know - I have facial/eyelid droop intermittent walking/muscle/breathing difficulties and now some swallowing problems!

I have to say that I am just dreading it and not really expecting anything from him because my last (and only!) neuro's determination that there is no evidence of disease. I feel dismissed and kinda on trial to prove myself :(

If anyone has any advice that may help I would love to hear it :) but I would also be so grateful for any luck or prayers you might send my way over the next 24hrs! Like I said, I feel cheeky asking knowing what you are all going through but I feel like my options are running out fast for the answers (and help) I need.

Thanks everyone - you posts and discussions are a big comfort and support.x

My neuro-muscular Dr is a jerk. He has the bedside manner of a rattlesnake, that said he is brilliant when it comes to MG. He gives a very complete exam and normally a 15 vial blood test. My visits usually last one hour. I see him every 6 months and my regular neuro every 3 months. I pray he gives you the best exam. Please post here and let us know how it went.
Mike

Hi,
My heart felt prayers are with you, It's scary going to see a new neuro because they don't really know anything about you and there only seeing you how you are right then. I know what its like going so far too, to get a good neuro so I pray that he/she works out for you. Having a good neuro makes a big difference.

Lisa:grouphug:

Oh, I know exactly how you feel (except that I only had to wait 15 months for my diagnosis, not 9 years...). There's so much riding on this visit. My thoughts and prayers are with you. I traveled about that far for my diagnosis, and it was a big day indeed. Please let us know how it goes. We're rooting for you.

Abby

Hello Unsure, :) I'm staring at the "9 years..." This is truly beyond my ken. I get a sense from your posts that you are personable and intelligent. I don't know that you need any coaching, so I am just going to make some suggestions because we all have to remember, there are others watching and learning.

--Listen, and don't interrupt.
--Make eye contact, without staring
--Nod every once in a while to indicate that you are listening
--Keep your answers as brief as possible
--DO NOT exaggerate symptoms
--Tell the doctor that you believe h/she could be your last hope
--Have someone with you who will stay quiet, and help you to listen
--Thank the doctor for seeing you
--Never ever "bad-mouth" another doctor, to a doctor

Mike said, "...My neuro-muscular Dr is a jerk. He has the bedside manner of a rattlesnake, that said he is brilliant when it comes to MG..."

So, MGers, the bottom line in this particular example is this: Do you want a neurologist who is "such a good doctor because, "Oh, he's a really, nice guy..." or do you want someone who will take care of business?!

I would suggest writing down your symptoms and history from the patient perspective. On the computer if possible. It helps if they are in chronological order. Re-read them and proof many times to remove any personalizaion of symptoms or treatments like Fortunatos said. The doctor can read more impartially than we are able to verbally communicate. Plus he has it in his notes to reference. Even doctors can not remember or write down everything we say. Fortunatos advice was very thorough for the personal interaction.

Renowned specialist of this type are accustomed to seeing patient that have often been misdiagnosed for years so they do not prejudged as other doctors do. If you are on mestinon, I would time my dosages so that the appointment fell right before the time for the next dose, so the doctor would see you when the mestinon was wearing off.

I will pray for your successful diagnosis and treatment. You are not being cheeky. We are each other support group and here any time.
My thoughts and prayers are with you,
Safe journey,
kathie

Thinking about you and hoping your visit tomorrow goes well. Sometimes it takes "fresh eyes" and, of course, an expert neuromuscular specialist to get it right.

9 years is too long to wait for a diagnosis. My wait was about 7 years. I saw probably 7 neurologists, I think, during my limbo period, but I could have lost count :( The doctors had me convinced it was in my head.

Others here on the forum have given you wonderful advice. I hope that you have a support person going with you to your appointment. It made a tremendous difference to me.

Please let us know how things turn out for you. :hug:

Cate

I hope and pray that you get some much needed answers.

Unsure, How did the neuro appointment go? Please update us.

thanks
kathie