New consultation on als

[dldugan]

My local neurologist was uncertain about my diagnosis of peripheral neuropathy and I had self diagnosed as ALS. He referred me to another neurologist, but that was more than 4 months out. That was not acceptable to me. I researched hospitals/doctors/clinics within reasonable distance and requested a referral to one that had an opening. The office of my neurologist had some problems making an appointment for me so I made the appointment myself at Rush University Hospital Neurology Center in Chicago only 10 days out, gave the information to my local neurologist, and asked him to make the reference. Unfortunately I got a diagnosis of ALS and a reference to the ALS Ccertified Clinic in Indianapolis, 50 miles from where I live. I was able to start treatment nearly 4 months earlier than if I had accepted the first referral.

I believe it to be important to take the initiative and be responsible for your own medical care. Your local physicians don’t live with your issues, don’t really know you, and handle most cases the same. My experience with several physicians has been that they are extremely busy and turn many of the contact/appointment issues over to staff that may not have the knowledge or the experience to give you correct guidance through the system. If you have a problem navigating the system discuss this with a relative or colleague.

 

[Nikki J]

What happened at your appointment?

 

[dldugan]

My first appointment at the ALS Clinic in Indianapolis took 5 hours. I am considering some trials, but it doesn’t look like the timing will work out. The Dr at the Clinic wrote an order for a brace to correct drop foot on left side. I will need a Trilogy—only at night to start. Longer distances are difficult to traverse with a cane so I will be getting a rollator. My next clinic appointment is 1/8.

 

[Nikki J]

Sorry I was unclear. I am asking the OP who was supposed to be seen earlier this week