Aa
There is a tremendous need
After reading through some of Quix's "myths" thread, it dawned on me how helpful it would be to those of us in limboland to have access to docs that are more progressive and determined in finding answers. Some are better diagnosticians than others. My husband was very, very lucky to have the doc he did when he came down with Goodpastures disease. It saved his life. Most of the medical people we've run into have never even heard of it because it's so rare. And he had a doc that knew about it, and had treated maybe one or two other people with it. It just so happened he was his GP at the time. He has now moved into specializing as a nephrologist.
Would there be any way to get a list of the better docs in different regions of the country for those of us that keep wasting our precious time and money trying to find one?
Why isn't this resource out there? It's a shame there isn't some sort of service that can rank docs by their successes treating and diagnosing patients.
Would there be any way to get a list of the better docs in different regions of the country for those of us that keep wasting our precious time and money trying to find one?
Why isn't this resource out there? It's a shame there isn't some sort of service that can rank docs by their successes treating and diagnosing patients.
Alex, I agree with Bob on this. Any information is better than none. On one of my ratings at one time, I mentioned that my doctor 0 who is no longer in state, was cold, intense and not particularly compassionate, but he was smart and practiced good medicine. A person who know they need hand-holding should shy away from this type, but someone who didn't care about personalities, just wanted state of the art medicine would do well.
I would receommend that you post anyway. Give your reasons. Let the other person decide if those things are important.
FWIW
Quix
I would receommend that you post anyway. Give your reasons. Let the other person decide if those things are important.
FWIW
Quix
The important part of the negative is the "why." If the provider has an "obtuse bedside manner" that could weigh more with some folks than others, but really not much of a negative to me. If the comment is more of the nature that he only reads the radiologists report, doesn't look at the images himself and isn't really interested in a diagnosis for the symptomatic problems... I look at that comment and think "Run Forest, RUN!" But that's just me.
Bob
Bob
Funny. I was already registered at the ratings site, but somehow managed to forget all about it! How did this get past me to the point I'd forgotten altogether it existed?! Huge brain farts these days. Huge!
You can have two people on the same forum or MS group going to the same Doctor and one will think he is great and the other does not. I have experienced it myself with both this forum and my MS groups. That is why I do not rate Doctors. Part of it is subjective. I do not want to mention a Doctor in the negative if someone else might have a good experience with him or her.
Alex
Alex
Excellent. Thank you. I could rate the neuro I've been seeing. He's not a bad guy. I think he was leaning toward an MS diagnosis until I talked to the MS specialist who said that wasn't it. So he then dropped the idea of doing a spinal tap. And then the wrist arthritis incident happened. At that point, he just sort of said, I don't know what to do with you. He was being honest. He was not good at inspiring hope in finding anything, or in finding a way to help squash this inflammation so I can get on with life. But he didn't leave me waiting forever without trying to help some way. He was always responsive if something new came up. My symptoms are so widespread, they just don't fit any model of diagnosis he has at his disposal.
What a great website. I wasn't able to find a list of practitioners, though. But it's nice to see how many people are working on solutions. I'm surprised to hear that nobody has tried Cyclophosphamide yet except for the study at Johns Hopkins. They use it for other autoimmune diseases. Why so long to try it on MS? Wow.
Okay - there is a site specifically for rating MS Neuros. It has been up for some time, but not that many people have registered and rated their good and bad neuros. The site came down some time ago, but reappeared and is still going.
The site is world-wide and there are only 500+ posts for the US, so not many people have posted their opinions. I find this sad. Someone needs to go to the various MS forums - and there are a ton of them (none as good as this) - and ask that people state their opinions.
The site is
http://www.msneuroratings.com/
Maybe people don't post because they are afraid of stating their opinions out loud online. This is an anonymous site and there is no way that a doc could find out who you are. Try using a different nam than you have anywhere else. I kept my name here and blasted the idiot that dismissed and embarrassed me for two years.
I encourage all of you - and all you lurkers, too - to tell your good and bad stories or just post a simple rating - so that searchers can have some idea of who to try and who not to try.
Please, it's really for the common good. It's the information that so many of you wish you had had.
Audrey is correct about the use of real names. If the comments are complimentery, there is no reason that they can't appear here on the forum, but if there is "any" negativity they will not be allowed. But, we all can private message (via our inboxes in the upper right corner) all the info we want about ourselves or others.
My first idiot, arrogant, dismissive neuro was on the local chapter of the MS Society list of "specialists". He told me I was too old to have MS. A real leader among men, that one. And you'll see his name under the Oregon listing.
If more and more of us would do this, this would be a great database for people in limbo or with a dufus for a neuro.
Just remember that anything you write should be only about your experience and your opinion.
Quix
Quix
The site is world-wide and there are only 500+ posts for the US, so not many people have posted their opinions. I find this sad. Someone needs to go to the various MS forums - and there are a ton of them (none as good as this) - and ask that people state their opinions.
The site is
http://www.msneuroratings.com/
Maybe people don't post because they are afraid of stating their opinions out loud online. This is an anonymous site and there is no way that a doc could find out who you are. Try using a different nam than you have anywhere else. I kept my name here and blasted the idiot that dismissed and embarrassed me for two years.
I encourage all of you - and all you lurkers, too - to tell your good and bad stories or just post a simple rating - so that searchers can have some idea of who to try and who not to try.
Please, it's really for the common good. It's the information that so many of you wish you had had.
Audrey is correct about the use of real names. If the comments are complimentery, there is no reason that they can't appear here on the forum, but if there is "any" negativity they will not be allowed. But, we all can private message (via our inboxes in the upper right corner) all the info we want about ourselves or others.
My first idiot, arrogant, dismissive neuro was on the local chapter of the MS Society list of "specialists". He told me I was too old to have MS. A real leader among men, that one. And you'll see his name under the Oregon listing.
If more and more of us would do this, this would be a great database for people in limbo or with a dufus for a neuro.
Just remember that anything you write should be only about your experience and your opinion.
Quix
Quix
Like you, I wish it were easier to find a doctor.
I was not impressed with the list that the MS sent me, especially after I heard how they "screened" doctors for inclusion on their list.
I'm sure that the forum moderators will chime in on this one, but it seems that forums have to be very careful about including the names of doctors in posts on the forum. In many forums, the rules are that names of doctors have to be exchanged through private messages.
Audrey
I was not impressed with the list that the MS sent me, especially after I heard how they "screened" doctors for inclusion on their list.
I'm sure that the forum moderators will chime in on this one, but it seems that forums have to be very careful about including the names of doctors in posts on the forum. In many forums, the rules are that names of doctors have to be exchanged through private messages.
Audrey
If you go to the MS Consortium site - mscare.org - you can search for specialists in your area. Although that is no guarantee about their bedside manner, at least you know they are specialists in working with this MySterious disease.
There is definitely a shortage of MS specialists in this country and as the older ones retire, it is only going to get worse, according to my msologist. I got lucky, very lucky, and found a young one who does have an excellent bedside manner. That's a rare combination.
good luck, Lulu
There is definitely a shortage of MS specialists in this country and as the older ones retire, it is only going to get worse, according to my msologist. I got lucky, very lucky, and found a young one who does have an excellent bedside manner. That's a rare combination.
good luck, Lulu
I guess that would explain a few things. The MS society here sent me a list of docs in this area based on whether they were interested in working with MS patients or not. It seems so inefficient. But I imagine that once the word gets out someone is a specialist, they'd get swamped.
May as well go down the list. I have a feeling I might just skip this medical network out here and go see the specialists at the universities.
May as well go down the list. I have a feeling I might just skip this medical network out here and go see the specialists at the universities.
Few Neurologists want to specialize in MS. It is hard to diagnose. No one really knows what MS is. Patients with MS have a lot of needs and many of the problems are hard or can not be fixed.
In our area with two university hospitals a few miles apart and a huge independent neurology practice you have about five MS Specialists at any given time. Some like research and have PAs see their patients. There are at least 5,000 people diagnosed with MS and at least that many in the diagnosis process. That is a 2,000 to one ratio at least. At one University they focus on research so you only see PA's never the MS Specialist. The big private practice does not like Medicaid or Medicare patients. The University double all the out of pocket fees at least.
There are plenty of private Neurologists who will see you but they specialize in headaches or pediatrics or brain injuries and may no little about MS. I was sent to these first and it delayed my diagnosis.
So the system is over taxed. I have had MS Specialists who have no clue who I am even though I just saw them and I get fifteen minutes. I was told flat out that I would not be taken seriously until I had a diagnosis because there were so many patients and MS patients get priority with MS Specialist. There is even a hierarchy as to how bad your MS is. It makes sense but it is not very humane.
You can get a list of Doctors who Specialize in MS from the NMSS but they do not rate them because the field is so small.
Alex
Alex
In our area with two university hospitals a few miles apart and a huge independent neurology practice you have about five MS Specialists at any given time. Some like research and have PAs see their patients. There are at least 5,000 people diagnosed with MS and at least that many in the diagnosis process. That is a 2,000 to one ratio at least. At one University they focus on research so you only see PA's never the MS Specialist. The big private practice does not like Medicaid or Medicare patients. The University double all the out of pocket fees at least.
There are plenty of private Neurologists who will see you but they specialize in headaches or pediatrics or brain injuries and may no little about MS. I was sent to these first and it delayed my diagnosis.
So the system is over taxed. I have had MS Specialists who have no clue who I am even though I just saw them and I get fifteen minutes. I was told flat out that I would not be taken seriously until I had a diagnosis because there were so many patients and MS patients get priority with MS Specialist. There is even a hierarchy as to how bad your MS is. It makes sense but it is not very humane.
You can get a list of Doctors who Specialize in MS from the NMSS but they do not rate them because the field is so small.
Alex
Alex
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