What should I ask??

[shelleynshaggy]

Ok, I have a few weeks to compile this list - but I am anxious.

Jim was referred to an ALS neurologtist at the Cleveland Clinic's ALS Center. What should I be prepared to ask. The ALSA representative I talked to could not believe they hadn't taken a more active approac h to his care. I did not realize that the neurologist I was seeing wasn't part of the ALS Center, nor do I understand why he didn't refer us there if he believes Jim has ALS - or even MND. His symptoms read like a book (at least from what I have researched - hard to believe how little I knew just a few weeks ago.) The ALSA rep asked me a bunch of questions regarding his care that I did not know the answer to - like why no more tests until December.

I am trying to take a more proactive approach to this appointment. Does anyone have any suggestions to specific questions I should ask (like tests or treatments I should ask for.) I trust that since this is the actual ALS center we will be with a good ALS physician - but now I a little leary - because I felt confident before.

Our appointment is Oct. 8.

Thanks for your input!
Rachelle

[brooksea]

Rachelle,

I hope y'all will get in at the clinic ASAP! (Oh, I see your appmt is the 8th Oct., still a while to wait. I would call to see if they can move it up!)

The following may be a start for you. It comes from the ALS Assoc site regarding getting a second opinion from an ALSA certified clinic:

2nd Opinion FAQs - The ALS Association (http://www.alsa.org/patient/opinion.cfm)

# Let the doctor's office know you are requesting a second opinion for an ALS diagnosis. Many doctors will schedule an appointment for ALS consultation more quickly than routine appointments.

# Often the consulting physician will be able to use the results of test you have already had thus saving money, time and the process of repeating multiple tests. Be sure your complete medical record, results of tests, and actual MRI, CT, or X-ray films and electromyography (EMG) recordings get to the doctor's office before your appointment - or bring them with you. By having the actual results rather than the report of the test, the consulting physician can provide his or her own interpretation of the test results.

# It's a good idea to have a relative or friend come with you for support and to take notes on, or tape record, what the doctor says and recommends. Realize that a second opinion appointment can be a stressful time and be sure to write out your questions in advance.

#Since you will likely be seeing an ALS expert, take advantage of the opportunity to ask questions about prognosis (what your future holds), research, treatment, availability of drug trials and, most importantly, how to manage ALS symptoms and maintain your physical function for as long as possible.

Good luck to y'all. I hope you will keep us updated.

[Katie C]

Having done THREE now (the original and two "second opinions") I firmly believe that the more the neurologist understands and treats ALS, the fewer the questions you'll actually have to ask... the two actual ALS specialists we've seen asked all the questions off my list before we got there, plus some! I left with information on nutrition, vitamins, the opportunity for a drug trial (we're still deciding on that one, I have questions for the doc), they even picked up on the cognitive issues... but it happens that it's both their area of interest in research.

In your case, I would especially be prepared to ask questions regarding the cognitive/FTD stuff... our first neuro didn't address it at all.. but then, he was an idiot. [gasp! did I type that out loud!?!?]

I know you have a notebook... keep it handy, and when you find yourself thinking "What the heck?!" jot it down.

[BarryG]

One of the really nice things about the ALS clinic that I go to is the team approach (and this is true for most clinics). There are three main neurologists, a whole bunch of interns and residents, plus all of the other specialists and between all of them, as Katie said, most of our questions were answered before they were asked.

[DgtofTNfan]

Rachelle,

You are very proactive to be keeping a list of questions. The whole process can be so overwhelming that a list definitely helps. Are you guys going for a second opinion, to get established with a new doc or for a ALS clinic visit?

I found that Dad's ALS Neuro and his nurse were very helpful and thorough and most of our questions were answered before we asked. The ALS rep also gave us a packet that included a boat load of information to sort through as well. Once you get to the clinic you meet one on one with each team member and the information just flowed real well and was shared with a lot of compassion.

One of the takeaways from the first meeting was the contact information for the nurse. We do not live in the same city as the clinic and I found that when Dad needed routine care and his local practitioners found out he had ALS that they always seemed a bit hesitant. I kept her number handy and encouraged his PCP and GI doc to call. I called her frequently with "Does this sound right to you?" questions. She was very helpful.

Seems to me after the unfortunately very limited answers to the "What treatment/research options are there?" type questions, we focused on:


weight/nutrition,
breathing
safety (mobility and activities of daily living)
and monitored with each visit. So I found it helpful to write down numbers/measurements and compare with each visit - maybe that is just me but it helped me understand the progression and what kinds of questions we needed to be asking so that we could stay one step ahead of where we needed to be.

Good Luck at your appt.

[shelleynshaggy]

There was an appt 9/24 - but by the time I got babysitting arranged and off work it was filled. We got this on "so fast" because it was a 2nd opinion. I am just glad to not wait until December like originally planned!

[shelleynshaggy]

Having done THREE now (the original and two "second opinions") I firmly believe that the more the neurologist understands and treats ALS, the fewer the questions you'll actually have to ask... the two actual ALS specialists we've seen asked all the questions off my list before we got there, plus some! I left with information on nutrition, vitamins, the opportunity for a drug trial (we're still deciding on that one, I have questions for the doc), they even picked up on the cognitive issues... but it happens that it's both their area of interest in research.

In your case, I would especially be prepared to ask questions regarding the cognitive/FTD stuff... our first neuro didn't address it at all.. but then, he was an idiot. [gasp! did I type that out loud!?!?]

I know you have a notebook... keep it handy, and when you find yourself thinking "What the heck?!" jot it down.

Our current Neuro seems more concerned witht the FTD then the ALS. That concerns me!

[shelleynshaggy]

Rachelle,

You are very proactive to be keeping a list of questions. The whole process can be so overwhelming that a list definitely helps. Are you guys going for a second opinion, to get established with a new doc or for a ALS clinic visit?

I found that Dad's ALS Neuro and his nurse were very helpful and thorough and most of our questions were answered before we asked. The ALS rep also gave us a packet that included a boat load of information to sort through as well. Once you get to the clinic you meet one on one with each team member and the information just flowed real well and was shared with a lot of compassion.

One of the takeaways from the first meeting was the contact information for the nurse. We do not live in the same city as the clinic and I found that when Dad needed routine care and his local practitioners found out he had ALS that they always seemed a bit hesitant. I kept her number handy and encouraged his PCP and GI doc to call. I called her frequently with "Does this sound right to you?" questions. She was very helpful.

Seems to me after the unfortunately very limited answers to the "What treatment/research options are there?" type questions, we focused on:


weight/nutrition,
breathing
safety (mobility and activities of daily living)
and monitored with each visit. So I found it helpful to write down numbers/measurements and compare with each visit - maybe that is just me but it helped me understand the progression and what kinds of questions we needed to be asking so that we could stay one step ahead of where we needed to be.

Good Luck at your appt.

That is one place we are lucky - since everything has been in the Cleveland Clinic - all the records are electronic. They can even pull up or PCP's records. They chart his weight, etc so it is one less thing I have to keep track of. I do have a binder w/ all his med records & reports up to this point. I plan to bring it w/ the notebook of symptoms & dates I have recorded.