Just A Thought

[Zaphoon]

I'm sitting here going through positngs and wondering if there are any neurologists that read this forum? Not that they would really have the time...

This could really give the medical pros keen insight as to what goes through the minds of their patients after the clinic visits. Shucks, why not pay an intern to monitor these sorts of forums and then have a weekly debriefing with them?

I think it would be good for an ALS specialist to present his/her side of the diagnosis process and possibly post examples (using bogus patient names) of how they started out processing for MS and wound up giving a diagnosed of SMA or something. Anyway, it would be interesting to hear some of their stories.

How about this: a section that allows doctors to post something like a recent history of a diagnosis. It would be a closed posting that the doc could submit without having to be bogged down with questions and answers. I'd like to be able to get into the mindset of a neurologist to follow the complexities, ins and outs and general process of going through a diagnosis.

I'd love for a specialist to drop by and present a bit of their side. Any takers?

Zaphoon

 

[CindyM]

I know my pulmonologist was surprised that my neurologists- all 3 of them- can't pin-point what is going on with me. I'd almost forgotten that, with most medical specialties, things are very clear.

Imagine an ortho saying, "well, your arm could be broken or it could be sprained or maybe you just over did things." That would never happen.

But things are different in neurology. I think they could read all night and still end up with lots of questions, LOL!

 

[fmarino]

There was a neuro on here asking questions about how to be more compassionate to PALS. He got a lot of responses but never replied to any of them.

 

[Zaphoon]

fmarino & CindyM,

You know, since I posted this thread I wondered why it didn't get anymore response than the two of you (and thanks for your posts). This has led me to ponder the matter further and this is what I have concluded:

Its not that neurologist aren't interested in these sorts of forums; they are probably just pooped at the end of the day. They see and speak with you in the clinic and then they go home and relax away from work, away from NMD and all else. I can understand why. Most of them are very good, very professional and very kind and have seen all of the disease they care to see come quitting time. No need for anymore - time for a glass of wine and a good meal with the wife and kids.

(Its hard for me to imagine a sophisticated MD burbing down a beer at home.)

Zaphoon

 

[lovelily]

Hello..My opinion is that the person who posted as a doctor, probably was not.

I think that if a doctor came on board, he would be inundated with so many questions from our group of people, that he/she would have to quit their practice ;-)....or certainly would have no time for sleep for his or her patients, in the morning. :smile:

I personally don't know how our friend 'Wright' does it. He certainly is dedicated to the well being of our mental health, as he continues to help many with his extensive knowledge.

My opinion is, he is the best! :smile:

 

[Al]

Actually, my Neuro does check in here once in a while to check out what I am telling people. He told me this at a fund raiser a couple of weeks ago. He said he tells new patients to check out the forum and wanted to make sure we weren't playing doctor. We don't so he's happy but I don't think he makes a habit of reading here. Between his 500 or so patients and his research, wife and kids he doesn't get much time to himself I'd bet.

AL.

 

[BethU]

I think most neuros have enough on their hands just keeping up with the science. My neuro told me only a couple of weeks ago about the connection of statins and ALS symptoms ... yet Al's neuro knew about it six months or a year earlier (can't remember the length of time). He may have gotten the news sooner because it was a Canadian study, but that doesn't seem to me to be a good excuse. But there is a gi-normous amount of sheer research for them to keep up with, and for many doctors, insanely long hours being on call, etc. plus living their own lives with family, friends, etc.

Also ... I doubt if most doctors wonder or worry about what their patients are thinking. Not in a bad way, but basically, our opinions and anxieties are not their primary concern, unless it interferes with their treatment. They are focused basically on finding out what they need to know about us in order to diagnosed and treat us,and anything else is just background noise.

From what I've read, most doctors are shocked if/when they have to go into hospitals themselves, and find themselves on the other end of the needle, so to speak. They simply have had no idea what it feels like to be sick, weak, and helpless. And until they actually experience it themselves, I don't think they would get it.

But it would be wonderful if they did get it!

 

[Al]

My neuro was the lead researcher on that study so I found out about it before it was peer reviewed and published. As everyone is always saying, it pays to go the specialty clinics in the teaching hospitals if you can.

AL.

 

[BethU]

Aha! Thanks for the info. I was wondering if my guy was seriously out of the loop.

 

[grantst44]

My husband's doctor said he never had an ALS patient before so he's not that familiar with it. (He is the best neurologist in our area) After loads of testing that took approximately 6-7 months, he just kept asking questions and it seemed like he was reluctant to give a diagnosis. He sent my husband to UVA (Neurology center) for more tests and a 2nd opinion for possible ALS.
It seems like the people in these forums know more about motor neuron disease than the doctors. It's only when one has been affected personally, do they want to know as much as they can about this disease. I work with doctors at a teaching hospital and I know they do not like to make a terminal diagnosis. I guess we have to remind ourselves that doctors are just people and can help but in these cases we have to find moral and sometimes medical support and information elsewhere.
I have learned so much about this disease since being on this forum. I am going to pass it on to his doctor. One big thing sticks out to me and that is it's progression varies with every individual. Maybe that is why it takes such a long time to diagnose.

 

[Zaphoon]

Grantst44,

Thanks for your input. The local neuro I saw couldn't pass me off fast enough when she suspected NMD. It wasn't because she wasn't concerned or didn't care. On the contrary, she really couldn't bare to be witness to something she had no control over.

Zaphoon