Appreciation of neuro with communication skills

[jumpinjiminy]

:-P Not that they're all bad, they aren't. Although sometimes I feel that way.

I put a few questions out there to this one:

Where are we in this process and what are the chances it can be identified and treated before something goes really wrong?

At this point in the game, if something did go really wrong, what are the treatment options we would have available to us?

What is your gut feeling on what we're dealing with?

He was very receptive, and understands completely why I'm wanting to be proactive. He appreciates proactive patients. Yahoo. He said he needed a few days to review my records, put together a game plan, and come up with those answers.

I'm happy. Answers are on the way. :-) Guess I just needed to figure out what I really wanted to know, and how to phrase it.

[kwarendorf]

Here's the MS Specialist "Do" story :-)

At the same time I got the referral to Dr. Don't, my girlfriend asked a colleague with MS who her doc was. She has been relapse free for 14 years. She gave my GF the name, said she had seen Dr. Don't in the beginning and then her guy. She loved her guy and was not too crazy about Dr. Don't.

After my experience wit Dr. Don't I went and saw her guy. Man is this guy good! He runs an MS management practice that has the following features:

3 additional staff MS neurologists
A staff Naturopathic Doctor
A staff Neuro-psychologist
A staff L.C.S.W
A staff PT
An attending urologist
An attending urogynecologist
An attending orthopedic surgeon
2 attending neurosurgeons
An attending Hematology/Oncology specialist
An attending pain management specialist

I spent 2 1/2 hours there the first time with only about 5 minutes of idle time. There was an assessment by a nurse practioner. This was followed by an hour in his office with him asking questions and taking notes. then he did his exam. The back in his office to discuss his findings.

That was just the assessment visit. The Management visit is in 3 weeks and will also take about 2 hours. There is someone available 24/7 and he gave me his cell phone #. I think I'm going to like this guy!

[kwarendorf]

"Your so right - there are good ones out there"

I found this out fairly quickly. I went to the MS specialist that was recommend by the regular neurologist who i was seeing, and who I loved.

Here's the MS Specialist "Don't" story.

She was very concerned about me, as I was mid relapse when we met. She was also confident enough to tell me that she was not the doc for me. She told me I needed to see an MS specialist. She gave me the name of a doc she had trained under.

At the same time I called a family friend who is the head of Urology at a large NYC teaching hospital. He gave me the same name as the neurologist, so off I went.

I spent 2 1/2 hours in his waiting room for a 30 minute audience, during which he left the room twice! He told me he wanted to do an LP. That was OK with me as I knew it would help confirm the dx.

I waited an hour and a half at the LP appointment. He came in the room, thought I'd just dropped in and asked if I could come back another time! I pitched a small fit and he relented.

It was the end of the day and as he finished the LP he said he had to leave. He told me that one of his colleagues was there if I needed anything. I lay on my back for the required 30 minutes. When I got up to go all the lights in the front of the office had been turned out. His colleague was there but was in a back office on the phone. What would have happened if I had needed help?

I waited ten days and called his office for the results. He read them to me and gave me the dx. I asked him to fax me the results, as I am keeping a master file. He said OK. I got nothing. Next day I called again and asked him to fax the results. I got nothing. The third day I called in the AM, asked for the results to be faxed and said if I didn't get them I was going to come to the office. I ended up going to the office. It was the last time I would be going to his office :-)

[sllowe]

A game plan, and will get back to you in a few days - Woo hoo!

Good for you to ask all the right questions. I'm thrilled to hear how receptive he was and appreciative you are proactive.

Your so right - there are good ones out there -  like most things, the bad paint them with a broad brush.

Stay slow when the weakness grabs you. It's all you can do to be able to move through it  - you'll want to move forward quicker but it's impossible when that's happening.

-Shell

[jumpinjiminy]

Sumana, I totally understand about that first visit thing. For me, it is more like the first year of visits, especially during or after a new occurrence that sends me over the top. I'm not quite sure yet how to cope with these things. There is still a part of me that can't believe this is happening.

When something starts acting up, my immediate response is anger and frustration due to having to slow down. If my legs go weak, I go into a mild panic state. I have no idea what to do or how to manage these things. Life goes on, and everything becomes that much more of a challenge.

I think neuros have a very hard job to do. For one, they don't have all the answers. They work in the very nebulous territory of not being able to give a prognosis, or even know what disease process is at work. The other, they have to give people some of the worst news about their health. And the other, shared with me by another specialist - neuros on the whole aren't typically social beings. For some reason, his appraisal was the field attracts a certain personality type that isn't as socially adept as the others.

Interesting, coming from an insider, but just one person's view.

I don't think it was as much the docs personality, although that certainly helps, as it was me figuring out exactly what I wanted to know and how to form questions to gather that info. Surprising it took me over a year to pull that together. Doh. Not sure why I couldn't verbalize this in a straight-forward, socially acceptable manner until now.

:-P

[Sumanadevii]

You know, I saw this post and didn't respond but was so happy for you.  It is so hard to find a neuro that you "click" with.  My first visit to my neuro was nothing but me talking "over" her and a lot of anger and not listening to her.  I wanted answers and yesterday!!!!!!

She calmly kept examing me allowing me to pour it all out, gave directions to my husband (cause surely I wasn't listening) on the next step.  She tried being all nice to me which at that time meant NOTHING to me.  

We both laugh at the bundle of a mess I was on that first visit.  Her answer was she knew something serious was going on (maybe a stroke), knew I was totally fed up with the medical community and she held nothing against me for that behavior.

I truly love this woman.  She is so devoted to her patients.  She doesn't miss a day when I am in the hospital to see me.  I call her office and she HERSELF calls back with answers.

I am so blessed and am happy for you, too.  Hoping maybe others can add a brag on their neuros.  I do know today all are not bad.