I THINK I may have convinced my husband to seek a second opinion.

[Buckhorn]

I think I may have convinced my husband that a second opinion is valuable. In the meantime, I wrote to the local ALS chapter and asked if they officially endorse the idea of a second opinion or not. I did read the "sticky" regarding the value of a second opinion. I do not want to alienate or offend our current neuro. I know that is addressed in the sticky as well, and it is great information igelb/Laura.

May I ask what website(s) to access to look up my husband's, neurologist's background, to see if he is fellowship trained in NMD's?

Thank you!

 

[Nikki J]

Often the site of the hospital a doctor is affiliated with has a bio. Depending on your state it might be on the board of medicine site when you check a license though often just the med school is there. Some of those healthgrade sites seem to list credentials. Google the name MD neurologist and see what pops out. Usually when people have mentioned a doctor I have been able to find the info with a couple of tries. Any doctor who gives such a diagnosis and is insulted by a second opinion is a doctor to be avoided in my opinion a good confident and competent doctor should support a second opinion for a fatal diagnosis

 

[Atsugi]

Your neurologist might actually recommend someone to give the opinion. It's not a big deal to them. It certainly doesn't threaten them, because they wouldn't have given a diagnosis unless they knew it was right. And of course, doctors are always right.

 

[mpnatx]

A second opinion is very important. My diagnosing neurologist sent me for my second opinion. He insisted I get a second opinion from an MND specialist. Like Nikki says, your neurologist should support a second opinion.
Marty

 

[KimT]

You definitely need a second opinion. If the two opinions conflict, get a third.

 

[Buckhorn]

Thank you everyone. And, I was able to locate the neurologist's info. on line.

 

[lgelb]

All else equal, I wouldn't ask neuro #1 for a referral to neuro #2 -- I'd dig around (happy to help if you want to post or PM name of neuro #1) and that way less likely to get two "related" opinions.

Best,
Laurie

 

[Buckhorn]

The neurologist we have seen is Scott M. Friedenberg, Geisinger Medical Center
The neurologist I am hoping to get into for a second appointment is Dr. Zachary Simmons, Hershey Medical Center, Hershey, PA
These two neurologists are in altogether different medical centers.

Sooooo - as long as we make sure Medicare will pay for a 2nd opinion, I should just call the 2nd neurologist myself and tell them we are seeking a second opinion? (and of course, take all copies of bloodwork and EMG with us .... that is all we have had done).

Thanks Laurie & all!

 

[affected]

My geography is pretty shocking - do you have an ALS clinic you can get the second opinion from. You want a neuromuscular specialist who knows ALS really well. I have no idea if the one you have been to and the one you are considering are, but I notice you say Medical Centres instead of ALS clinics.

 

[Buckhorn]

Hi Tillie. Yes, both of these physicians are ALS clinic affiliated. I knew in the beginning that was the type of neurologist I should seek out. I believe that Dr. Friedenburg was recruited by Geisinger specifically to start up the first ALS clinic in our area. He did his residency and fellowship at the Mayo Clinic in Rochester. He is the director of neurophysiology, MD program & EMG lab & his clinical specialties are neurophysiology & neuromuscular medicine. So, I think he is probably top notch. Dr. F's vitae (plus my husbands clinical "presentation" or differential diagnosis) has made us hesitate to seek a 2nd opinion, although my husband has only had a clinical exam and EMG. The passage of time itself has been diagnostic.

The other physician I mentioned is Dr. Zachary Simmons. He is affiliated with Penn State/Hershey Medical Center at the Penn State Neuroscience Institute. This clinic is "ALS Association Certified".

Our niece (who is a nurse practitioner working on her MS @ Yale) is pushing for us to go to Columbia, Mayo or Hopkins. She says "go big or don't go", LOL:lol: She told me that Columbia specializes in "personalized medicine --- aka sequencing your genome to find out what specifically may help as part of the treatment plan". Apparently many of the physicians there use individualized drug "cocktails" (such as immunoglobulin cocktails) tailored towards the results of an individual's genome, in terms of symptom management. IDK if that is for every patient, or just the ones with FALS. So, now she has me rethinknig the 2nd opinion doc.