Question/advice

[1fanatic]

Going with my mom next week to ALS expert at UCLA for "confirmation of her 2nd opinion." Can anyone suggest and questions or concerns that I should ask the doctor while we are there. I have no idea what to expect. I just know that the neurologist said he always gets a confirmation of a diagnosis then we move on from there. I don't expect any further testing to be done while we are there. Maybe he'll just look at all the test results and say "yep, its confirmed." Then what?......... Ugh.

Thanks!

 

[Ms. Pie]

Then find your local ALS Association. They know everything about ALS and have Support Groups and loaner closets with everything you'll need. They'll loan you about anything for as long as you need it. Also, you'll need an ALS savvy Neurologist and Pulmonologist as well as her Primary Care Physician for her medical team. Doctors that she is comfortable with. Keep looking until you find the right doctors that really care about what's best for her and her wishes. Ask any questions here too. Xoxo

 

[ltbeauti]

My local ALS chapter has been a real God send. They have made my life much easier. I can't sing their praises enough.

 

[st123]

My local ASL Association is sending a nurse out tomorrow for a home visit with my Dad and will perform an assessment of what we need now and will need. She's bringing a wheelchair that we're not quite ready for, but want to have on hand. She said she's also bringing some printed info that I've already read online, but I'm sure my Mom will find helpful.

She also told me she's on the 'team' at my Dad's ALS clinic (first visit is only 4 days away, finally) and participates in the weekly case reviews with the clinic team members. I think that will be very helpful.

Now... wondering just how clean my house has to be for this visit

 

[st123]

lol, sent to moderation... wondering what I typed that caused that!

 

[Ms. Pie]

ST, I can type "Nice Job" and have it go to moderation. Who knows!

 

[st123]

yeah, but you're a troublemaker, lol

Not me! lol

 

[notgivnup]

Ask if every other stone has been turned over and looked at. Don't be afraid to ask anything and everything that comes to your mind. So sorry {{HUGS}}

 

[Katie C]

And I suggest you get yourself a notebook and write down questions as they come to you so that you don't have to worry about forgetting something. Always take the notebook with you to appointments... you can also write down answers (Dr North even wrote things down in my notebook!) It's a good resource to have.

 

[Ms. Pie]

My husband keeps a notebook and a folder with a spreadsheet with my medical history for years and copies of all test results. It makes it so easy going from doctor to doctor.

 

[st123]

1fanatic, I started a notebook when my Dad first got sick and I take it to every appointment. The tabs and sections have evolved through the months, but there are some things that are always in it - in case the doctors need info: his med list, his insurance info, his past treatment for anything, notes on eating habits, changes in health and/or behavior, as well as names and phone numbers of other medical providers.

Then I have a list of questions that Mom and I want to be sure to ask as well as blank paper to take notes because it's sooo easy to forget the things you hear when you're stressed (or just old like me).

Poke around here in this forum for question ideas. I got lots of ideas here.

 

[primerib16]

I just had a second opinion from UCLA in January. I was there for about2 1/2 hours and, y es, they did some tests. I have the highest regard for them. Ask t hem about attendin the ALS workshop on a quarterly basis. I am driving from Las Vegas to attend the workshops.

Good luck

 

[notgivnup]

Again I am so sorry about it being confirmed with second opinion, is that correct? If you have anymore questions there are so many knowlegable people here that can help, we also have many threads for support of many kinds. Welcome to the family no one wants to belong to but we are a family and try and help each other the best we can. {{HUGS}}

 

[hangingon1]

It is standard for neurologist to seek a second opinion because ALS is very difficult to diagnose. My pals went to 4 different physicians who were unable to find out the real cause of her symptoms. One even wanted to do carpel tunnel surgery, which would have been painful and unnecessary. It was only after an ALS specialist looked at her that it was confirmed as ALS. At least then we knew the truth. Please stay here on this site and read. read, read. You will get a lot of info on what to expect with progression. I hope she does not progress, but it she does you can get the things you need and do the things you need to do ahead of time. Do not wait until you need equipment to get it. Go ahead and get a wheel, or companion chair. Get a bedside commode. Get a recliner. Learn to change an adult diaper. Many of these item can be loaned to you from your local ALS chapter if they have them in stock. The one here in Atlanta has a warehouse full of stuff and they deliver. It is a great service.

 

[notme]

Also ask if there are any clinical trials your PAL is eligible for perhaps.

There may be some good questions to ask on the ALSA.

one thing I'd add--don't wait til equipment is absolutely necessary to start learning how to use it. For instance, tech to help with speech, walkers, wheelchairs.

One of our great pALS here is having to fight medicare for an electric wheelchair--start the battle NOW rather than waiting. I'm assuming you've already done the SSDI paperwork. ALS is an auto-approve, and there is no wait for medicare once the 5month period is over as in some conditions.

It'll seem overwhelming--get help from sources in your state.