Got the dreaded news...

[Ells]

I understand your frustration Carol Sue, but don’t make enemies of anyone you might need to deal with in the future. I speak from personal experience!!
By all means write a letter, but read it back a few times before it’s sent.

 

[KimT]

CarolSue,
Does your plan require a referral? Can you call KU and tell them you received a dx of ALS and want to set up an appointment for a second opinion?. Make sure you have all your records, especially the EMG/NCS, MRIs, blood work, and office notes.

 

[CarolSue]

I'm really not sure if our plan covers to go direct to KU Med Center without a referral. My husband did call them to check on if they covered a second opinion at all and they do. My primary is working on it and I think I will call her today to see where we are in the process.

Thank you all for your comments and suggestions!

Carol Sue

 

[vltsra]

CarolSue, my husband was diagnosed in October, we are going for a second opinion today but don't have our hopes up. I understand the anguish you are going through. Our original neurologist was completely lacking in compassion; his main aim was to prove he was right about everything, and he gave us a lot of misinformation - and I too have a letter drafted. I am hoping the second neurologist, who is a specialist, is better and that we can change doctors.

Val

 

[affected]

vltsra that's why we ask if people were diagnosed by a general neuro or one specialising in ALS - it is so important to have the 'specialist specialist' so to speak

 

[Nuts]

Sorry to be so late in welcoming you, Carol Sue. I'm glad you are working the second opinion, and would suggest that you do seek care at an ALS Clinic, not from a general neurologist who doesn't specialize in ALS. As you have probably read here already, the clinics provide a host of information and support, and you will see a variety of specialists at each appointment so that you don't have to make multiple visits out to cover all your bases.

Becky