ALS Clinic Appointment Lead Time

[fl4ian]

I have a neuro appointment (first one) in a couple weeks. I seem to be deteriorating daily. I have called the neuro's office to see if they can move up my appointment, but they're booked. They did, however, put me on the cancellation list if someone backs out of an appointment.

My question is this: Should I be making another neuro appointment with either the ALS Clinic or just another neuro right now? Because I'll want a second opinion either way.

How long does it take to get an appointment with the ALS Clinic? And also, what's the difference between the Certified ALS Centers from the ALSA, and the MDA ALS Clinics, because the ALS Clinic is not listed as a Certified ALS Center.

The closest ALS Clinic is at Ohio State (OSU), and the closest Certified ALS Center is the Cleveland Clinic. Any opinions? Is one better for a diagnosed or second opinion, and the other is better for ongoing stuff?

I'm confused and irritated.

 

[Boots]

2nd Opinion

We also did the second opinion thing. Yes I would personnaly advise you to schedule it now. We did our 2nd opinion at a Mayo Clinic. Go on-line and find the one nearest you and make your 1st contact via e-mail. At least the one in Rochester, MN was good to deal w/for us. I had tried to contact them on-line, but did not hear back. My husband (the ALS patient) then called them and they saw us w/in a week of his call. We were already in their computer due to my internet efforts to contact them so it really worked well for us. His first diagnosed was at the end of May in Kansas City and our appt at the Mayo ended up being the following week.The only downside for us was the Mayo confirmed his diagnosed and they are pretty depressing when they give you that diagnosed. Very cut and dried. Do also if you can get an appt at your closest ALS Clinic as they can provide a wealth of helpful information and contacts. BUT please don't anyone make you feel like you have received a death sentence. I struggle daily with keeping my hubby looking at the good stuff. You DO still have a life to live. We have an adorable grandson that turned 1 yesterday (our 1st Grandchild) and numerous other blessing to be thankful for. I love him and need him. I will ALWAYS accept him as he is and be thankful to have him with me. He will NEVER be a "burden" to me or our children. Just focus on your GOOD things and GOD will see you through. Take Care and may God bless you always. Boots

 

[pamwagg]

Had the same trouble

My best friend J had the same trouble, but it was with the ALS Clinic. The neurologist diagnosed him after waiting 6 months, then he was seen at the Lahey Clinic (like the Mayo) a week later, but the local ALS Clinic, the only one in the area, made him wait 2 months, despite the fact that he is rapidly going downhill. He had to wait so long that he decided not to go to that clinic at all, despite its close proximity, but to travel to Lahey for his once-every-2-months appointments, and others if necessary in between. I agree, I would schedule that second opiinion immediately, and would choose a well-known clinic like Mayo or Lahey, where they can take you quickly and do a thorough job in a concentrated amount of time. I feel bad that your neurologist is taking so long in seeing you; in the case of ALS the waiting to know is so painful, and in cases of rapid progression, well, every day matters. The important thing in waiting is to make sure each day counts, whatever the outcome. Good luck to you.