New Neurologist

[Ernie]

Hi,

I have an appointment with a new neurologist this Thursday. I am very nervous because I would like him to investigate why I have muscle weakness and muscle paralysis. So far, I have seen about 6 neurologists who just took down my medical history and did not do any tests because my symptoms don't match known disorders. 2 of them (well known) even told me that since I am unique I am not worth investigating!

I am afraid I will loose my temper if he is condescending or just plain ignores my problem.

What can I do to keep calm and "proffessional" looking?

How can I go about to convince him to test me?

To top it all when the neurologist does the basic neurological test in the room, ie walking on the straight line on my toes, it triggers my syncope. How do I deal with that?

Thanks

Ernie

[geneva]

Ernie, I know I don't have all the answers to your questions but I thought I might add a suggestion. What about taking someone with you to sit in on your visit? I know you have a good friend who helps you and probably knows a lot about your condition. She could be the one to help you keep the focus on the things you want to ask or get the doctor to do (perhaps a list made up in advance?). Your friend could also take down notes for you to review later.

With my last neurologist, I would make a list of the questions I had in advance and hand them to him when I arrived. He was great about going down the list, one at a time and giving me answers. He was very open to discussing different tests or medicines. Unfortunately, he has moved!

I like the direct method ---If there is a test you want, ASK him to do it, versus trying to "convince him". I know it doesn't always work but I think being very clear about your needs is a good starting place.

good luck

[StaceyYount]

Hey,

If you can, it has helped me and I think a few of the others, to write out what you have experienced so far and give it to him before your appointment. Like tomorrow send it to his office so he knows what to expect when you are there. Also I think if you are very organized and have a list with you it makes the visit go more smoothly. Actually when we went to see my regular GP on Friday we took a list becuase we had several things we wnted to talk about and he even said he appreciates us being organized. So if you can't get the letter to him before hand take it with you. Might save soem time on the background stuff and get to the stuff you want to highlight. Having someone else there is always a help, sometimes Jim can explain things better than I can. If nothing else we take articles with us and last time pictures of micrscope slides that Jim(true love!) had taken, anything to try and show you know about things and that you have a direction. Does that make sense?

Stacey:-)

[DawnA]

Ernie, I wish I had advice for you. I hope and will pray that you have a neurologist who is openminded and has a good heart. I have not had much luck with neurologists myself. Does this neurologist have a specialty. Is he/she familiar with metabolic myopathies? Have they analyzed you for periodic paralysis? It sounds like you have more that one thing going on. Lets hope this neurologist loves challanges.

DawnA

[EarthMother]

Dear Ernie,

I wish I had sage advice ... I have tried taking my husband to help speak for me, I have tried writing down a list of questions and points I want to emphasize, I have tried bringing "evidence" from my research ...... and in my experience it seems to boil down to a game of chance. A "good" doctor will listen. A "good" doctor will explore all of the options. A "good" doctor will work as your partner in this discovery process.

And a "bad" doctor will ignore everything you bring, anything you do, anyone you bring with you for support.

This is not to discourage you by any means .... simply realize that if this professional you meet with on Thursday falls into the latter catigory then you don't want them anyway. The right person will come, at the right time.

All of my hopes and good thoughts are with you that THIS appointment will yield fruitful results.

Good luck and let us know how it goes.

EM

[yogini]

Ernie,

The others have given you good advice. I think this is the appointment you've been waiting for for a few months? I just wanted to say I'm glad it's here and I wish you luck with the new doctor!

-Rita

[Guest tearose]

Hi Ernie, just keep your cool!

All the above suggestions are good...make a list, know what you want, ask for what you need....

The hard part is that you don't know if this doc will be professional or another non-keeper.

So think of ways to deal with either situation. If this doctor is good than it will be easy to say thank you, I look forward to working with you to help me.

If you feel resistance and awkward say to the potential non-keeper something like.."If my challenges are too much for you to help me; please tell me now so I can find someone who understands autonomic nervous system malfunctions!" or "I do not want to stress you or take too much of your time or my energy so if you don't think you are able to help me tell me now please."

See what I mean? Keep your focus, keep your position of strength and calm...Ask questions, write down answers and believe in YOURSELF!!!

good luck, tearose

P.S.

As a last resort if you DO get a quack remember the little gem Earthmother recently shared with us.

Ask the doctor if his medical degree is factitious!

Have a zinger of an answer so you leave with your dignity!!!

[Ernie]

Thanks everyone for your wonderful advice,

I am integrating what everyone has said. I am working on my medical history. I am trying to stay focus and calm but I am as stressed as if I was going for surgery. Talk about adrenaline rush!

Yes Rita this is the appointment I have been waiting for many months.

Dawn, I have not had any medical investigation besides POTS and NCS. I was always referred in psychiatry for any problem I had and that was it. Now that I have a real diagnosis some doctors are starting to listen to me but this is new. I was told he is a specialist in muscle disorder but when I took the appointment the secretary told me he is a specialist in epilepsy. So I guess I will find out when I see him. I was told by my doctor that this specialist is open-minded. I told my cardiologist that I did not want the neurologist to think that I am a Martian!

Geneva, I'll post under another topic to have suggestions on what test I should ask for? Thanks for the suggestion.

Ernie