Activity

Translated via google translate:
Well, I also settle for the 19th, for my own good.
 

Bueno, tambien me acomodo al dia 19, por mi bien.

A mi el 12 de julio me viene bien

I too suffer from heat intolerance with LEMS. I had the heat intolerance before I was diagnosed with LEMS. I remember telling my neurologist at the time about living in air conditioning and horrible sweating if I exerted any energy in the heat. This was part of his referral to the autonomic nervous system lab that was just the beginning of 7…[Read more]

Ashley,

The 19th works for me! Thank you for trying to accommodate.  I just got released from hospital with pneumonia.

LEMS and pneumonia are not a pretty pair. 5 days later and lots of IV antibiotics and steroids, and hard work from Respiratory Therapist, and a loving spouse got me through. I was under the care of an amazing hospitalist who is…[Read more]

@dpmitnick I think that’s a good way to find a neuromuscular specialist. In my area The UT Southwestern Neurology clinic has neuromuscular neurologists. The one I’m trying to leave practices there 3 days a week. I’d like to hope that the VA can send me out for someone.

Hey @dpmitnick

@Pricewool had to schedule an appointment on the 12th, so we need to reschedule to the 19th. Will that work for you?

I think the key is getting a referral to a doctor affiliated with an Autonomic Nervous System Lab. I was fortunate that my neurologist was part of the Neurology Department at a large teaching hospital that had such a lab and doctor who specialized in autonomic nervous system diagnoses. He has since closed up shop and moved to the Cleveland Clinic.…[Read more]

July 12th at 5 PM works for me.

David

You are welcome! That would upset me if I felt I were being dismissed or marginalized. I’ve heard comments like this before. I hope you will continue to advocate for yourself and get the attention you need and expect from a good medical practice.

I’m learning doctor patient relationships when there is a rare disorder involved can be difficult. It is frustrating if you don’t feel you’ve got other options. I filed my grievance in the VA weeks ago. Interestingly it goes to the department head of the clinic where the problematic doctor practices for a solution. So far they’ve done nothing…[Read more]

@specialk70
Thanks for that tip! I didn’t try taking Imodium when I trialed Mestinon but that might be something I try in the future!

Oh boy! Sorry the communication is poor but what you said came right of my diary. He does everything by the book so i really need him. He is the only dr in our area. Im thankful but frustrated.

After reading everyone’s posts and replies, I am discouraged and inspired.  Reading about everyone’s experiences with their doctors is very insightful and eye-opening.  It seems I am also at a crossroad with my Neurologist.  Her eagerness to get to a diagnosis has abated and I find myself waiting weeks for tests she wants me to get and even longer…[Read more]

To me this is very exciting that your doctor is curious enough to run these antibodies tests. Please keep us informed as you gain more knowledge from them!