Seeing my third neurologist on Monday need some guidance

[frowngirl]

Hello Friends,

Well back at it again. I am seeing my third neurologist on Monday. I picked a female this time...I am hoping that maybe she will listen since the arrogant males didn't. I was told at my last appointment that this is no way MS because their are no new lesions from 2006 to 2009. I was also told not to have another MRI done and in no terms should I seek out another neurologist for a second opinion. Yes indeed... and this came from a Cleveland Clinic doctor.

What I am looking for is some coaching. I had Quix take a look at my symptoms and MRI and she felt quite confident that it looked like MS. 16 lesions and counting and 15 years of miserable symptoms which are now taking over my mobility.

What I need help with is how stern should I be and should I request to be treated to see if I get better. Is this even an option???

I want to be armed and ready to handle any comments she may make and fight back. I have never done this in the past  and by God I am going to do this on Monday.

If you have any suggestions for me please let me know.

Thanks again!! :)
Will fight to the end
Dawn

[Sparkysarah]

Hi there

I have just read your post and feel that what you are asking for, is some help with how you should be when you see your third neurologist.

First of all wipe the slate clean from your previous appointments as this is a fresh start and a chance to have new eyes look at you, your clinical history and your existing results.

I would suggest that you are just yourself and try and be as open and honest as you can be. There are suggestions on the health pages about your first appointment and so I shall not dwell too much about taking your history, being concise but thorough and using your time effectively. You also have the added advantage of having done this twice before and can reflect on where you where not happy with your previous appointments.

You ask if you should be stern.....and I would suggest that this is not the best approach as you do not want to come across as being aggressive. What you want to achieve is that you feel as if you have been listened to, that you have fully explained all your symptoms and that your questions and concerns have been answered.  So I shall suggest a few assertiveness ideas to help you.

The golden rule is never lose your temper as this does not help!

When you are talking, own what you say by always using I.  For instance it will not come across well to openly ciriticise the previous neurologists as don't forget they are all in the same profession and tend to stick together. So instead of saying "Dr X made me feel you could say "I felt that when I saw Dr X....."

When you are talking to the neurologist, mirror back to her what you has said to show that you are correctly understsanding what she is saying to you. This gives her the chance to explain to you her perspective.

There are other things that one can do and say when in a confrontational situation, but I am not sure that they are relevant or that it is helpful to go in expecting a fight. I would try and go along with an open mind, take someone with you who you can talk to afterwards and who can jot things down if necessary.

With regards to treatment I think that you are not yet in a position to demand this until you have been given a dx and this is the frustration of being in limboland. It is certainly in order to ask for treatment in respect of ongoing symptoms and nerve pain, but this is different from what I am guessing you are hoping for..interferon treatment.

In addition the nature of RRMS (if that is what you have) is that there are periods of remission and so it is not a matter of worrying about not getting treatment if you get better. We all aim and hope for periods of remission and interferon treatment does not cure MS...it just hopes to reduce the number of relapses and hence the quality of life. One of the things that we all have to come to terms with is that if we have MS, there is no cure, it is within us and comes and goes but how this affects us all is individual.

So hope this has given you a few pointers in the right direction and I hope that your appointment goes well and that you feel you have been listened to and understood.
So remember assertive, but not aggressive!

With love, hugs and support

Sarah x

[bairdy]

hi
sound like my situation
be your own advocate you know your own body!!!
15 years of problems means somethings wrong be ready to stand up to the dissmisive approach from the neuro.
hopefully she wont be as not all are the same. my second one has been excellent up to now.
take all your reports and as much info in case its asked for
let us all know how it goes
regards bairdy

[willowwoman7]

I am very surprized to hear about your experience with the neuro at the MS center at CCF. I went there for a consult at my regular neuro's request and he was just wonderful. He looked at my MRI, read the docs notes and came back and said, "Yep. Definitely MS". This leads me to wonder exactly why he said that. Did he offer any other explanations or suspicions such as vasculitis or something? After my experience, I just find that odd.

Also, off topic just a bit. What kind of insurance do you have? I've noticed that since I have 100% coverage, which shows up in the charts, if I have to go to er for something and my daughter who has no insurance has to go, we are treated completely, and I do mean completely differently. They are thorough with me, and quick and brusque with my dtr. So just wondering if your medical coverage could be an issue. Of course, it shouldn't be, but it is what it is.

[COBOB]

15 Years of symptoms and 16 VISIBLE lesions.  See what she says.  I ask here what she could attribute your symptoms and declining mobility to.  I don't think anyone wants a diagnosis of MS, but we do want A DIAGNOSIS (or at least I'd like one.)  I said visible lesions, because medicine doesn't really know what those small lesions that don't show up are doing.  And the neurologist is only counting what they can see on the MRI and they need to consider the patient in front of them.

Stick to your guns.  The previous doctor doesn't have to live in your skin or deal with your pain.  But give this one a chance.  She may see this a totally different way.

Bob