Advice about DUKE

[Sammantha]

HI, everyone this is Sammantha.......... I want everyones opionion on something. If you know my history i have had an abnormal EMG and normal one. I have brisk reflexes and muscle wasting.... I have had bad experiences with Neurologists at a particular place and all the while i have been sending my test information to a neuromuscular specialist at Duke Hospital N.C. He said he would see me right away back in June, but i still had a lot of testing planned at another hospital. I sent my recent normal EMG results to him and he said, AGAIN my advice is to come to the clinic, we can get you in next week....... Now should i go and know whether or not for sure, or should i do the wait and see what happens approach my other neurologist wants to do? What should i do i am so confused? My signs/symptoms are progressing but very slowly....

 

[Midnight]

Hi Samantha,
I have read up on your threads and unless it is a financial issue, if it were me... I think I would go. Personally I am having a very rapid progression of symptoms (can't swallow, eat, atrophe, muscle cramps) and I am still holding out for some other type of disease, but tests keep coming back negative and it is very difficult to get into doctors when it IS a necessity. I would take advantage of the opportunity. These doctors get busy. Hopefully they will tell you some great news & at a minimum hopefully somebody will be able to give you the friggin clarification you need. I know how frustrating it can be, they have been so wishy washy with you. Good luck with whatever you decide. You deserve great luck. We definitely know you have a strong heart by know after all they have put your ticker through

 

[ZenArcher]

Sammantha, you answered your own question in your post.

I have had bad experiences with Neurologists at a particular place and all the while i have been sending my test information to a neuromuscular specialist at Duke Hospital N.C.

That tells me you don't trust the doctors you are currently dealing with. If you don't trust them, then why waste your money on them. If you get a diagnosis from doctors you don't trust will you believe it? How about this doctor at Duke? Doctors are a dime a dozen, if you don't like them move on. Find a doctor you're comfortable with.

 

[oldmoor]

Advice about Duke

My sister was diagnosed at Duke. I attended many of her appointments. The doctors were very thorough,and the whole staff very professional and friendly. It is a very busy place,but they had time to go over things thoroughly.

My sister recently changed clinics because the Duke site required an overnight trip,and travelling has become very difficult for her. She is in a smaller setting now,and gets the same wonderful attention and care from very knowledgeable folks as she did at Duke. Best of all, it is only a 40 mile drive. Thank goodness these clinics are accessible for her.

Although I am not the patient,it sure seems to me that the ALS clinic approach is a great source for information,loaner programs,therapies,and receiving more educated opinions from folks who are much more familiar with PALS.

While I praise these places ,I am so sad that my sister needs their services.