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Amanda81

Active member
Joined
Nov 1, 2012
Messages
57
Reason
Loved one DX
Diagnosis
12/2012
Country
US
State
IL
City
Central IL
Hi... My mom has been referred to Washington University in St. Louis for a 2nd opinion on her Neurologist's diagnosis of ALS. We are no-so-patiently waiting for a phone call with an appointment date. But I have so many questions!

Can anyone tell me what the 1st appointment will be like?
If the diagnosis is confirmed, will this be her new doctor?
Does anyone have any doctors they prefer or don't prefer (if you have also been seen there)?
Do we have a choice? Can we go anywhere? How does insurance work if we want to pick a different doctor after this one?

Anything to help me prepare and understand what is going on would be appreciated. I'm a very organized person... I plan ahead... I like to know what to expect. I just want to be as ready as possible. :-/

Thank you in advance!
 
My 1st appointment was a meet and greet, med history, and basic exam testing for weakness, reflexes, watched me walk without my cane. Ordered all sort of blood tests and a emg/nvc. I really liked everyone I had dealings with at Washington U. Never had a real long wait and everyone was very explanitory and polite. I think you will be in good hands. Be sure to bring any medical records you have reguarding the problems your mom is having, including test results. I did that but my Dr. said he did not trust any emg results from before because every dr does it differently and intreperts differently. so don't be frustated if they want to do everything over as far as testing. I know it is hard to hear but you have to be patient with it all. I wanted to know right away as I had been searching for 5 years and thought he could look at all the info I brought with me but every dr. is different and do things in their on way. But my dr was vert determined to find my answers and he did, I trust him completly.
 
Amanda - waiting for an appt for a 2nd opinion is so stressful. Especially at this time of year when weather and holidays figure into the appt times. I went to mayo clinic quite a distance from my home for a 2nd opinion. They gave me the results while I was there (confirmed ALS) and sent a report to myself and my neurologist. Mayo was willing to have me as a patient but it was not logistically possible for me. I then met with my neurologist who answered my questions, discussed ALS with me, and suggested several ALS multidisciplinary clinics in this area that i might want to choose as my doctor moving forward. He was more than happy to continue as my doctor but told me the benefits of a specialized clinic. I think your insurance will determine if you can choose anyone or need to be referred.

See what Washington says. I was at mayo for 4 days and they did more tests to rule out some other rarer diseases my nuerologist may have missed. I don't know what wasington does, but at mayo i met with a dr and he reviewed all my medical records, came up eith several additional tests he wanted to be done to check for some other things, and then met with me again to give me the results of the tests and his diagnosis. There's always the chance they'll find something else. Mayo was very helpful in suggesting hotels in the area that offered discounts for medical patients. Washington may have a lot of helpful info when they schedule your mom. And ask the dr at Washington what he suggests for your mother's care moving forward.

Good luck. I know it's stressful waiting for the call from Washington. I wish you the best. Keep us updated.
 
Mich5 has a good point when discussing the benefits of an ALS multidisciplanary clinic. These are people who specialize in ALS and ALS research. Why go to a "general" Neurologist when you can go to a Neurologist who specializes in ALS, if in fact the diagnosis is confirmed. I wish the best to you and your Mom at this very trying and stressful time. My local ALS chapter was a great help in providing information regarding treatment available locally.
 
St. Louis is only 2 hours for us, so it's an easy trip and I've been there many times. But I wasn't aware that we might be there for more than just a day. I will have to take time off of work, so that is good to know. Is this normal practice? Do a lot of people stay for several days for more tests?

I think my mom's neurologist (that is referring us to STL) said that the closest specialist is in STL. So we might be travelling a lot. I don't know... everything is so up in the air!

Thanks for responding, any information is helpful!
 
Amanda, My mom's diagnosis of ALS was confirmed by a second / third opinion in September. Our family leaves about 25 miles from St Louis. I believe in the St Louis area there are two groups which specialize in motor neuron diseases. SLU Care which is associated with the ALS Clinic and Washington University which is associated with the MDS clinic and as part of it they treat ALS patients . We took my mom several times to SLU care for her final diagnosis. Each office lasted 1 -3 hours depending of if they were running test. They wanted to be very sure before her condition was caused by ALS before giving a final diagnosis.

Good Luck,

Steve
 
Steve - Thanks for the information! I wonder if they will have us stay a couple days since we live further away? Was your experience a good one at SLU? We are going to Wash U. Do you think that is okay? I don't know what MDS is, I will have to look it up. Thanks!
 
Amanda, SLU and Washington University are both very fine organizations. After the local neurologist diagnosed my mom with ALS we took her to Washington University because we were able to get her in quicker. The doctors there were leaning toward a diagnosis of ALS and my father couldn't accept it so we took her to SLU Care for third opinion. (She was never formally diagnosed by Washington University) Both organizations have very good to her. Washington University is a research facility (in my opinion) so if there are any clinical trials available they may have quicker access to them. (I have asked the SLU ALS clinic about one clinical trial and they felt if she fit the criteria she could participate in the trial.) The staff at the SLU ALS clinic has been very good to my mom. I was told there are about 40 patients in the SLU ALS clinic. I was told there are about 300 patients in the Washington University MDS clinic. The MDS clinic covers a broader range of motor neuron diseases. Steve
 
Your mom can always choose her own doctor. A second opinion CAN be just that-then back to her original doctor.

There are advantages in a multi disciplinary clinic--more things in one place--pulmonary, ortho, occupational therapy--etc.

Most docs that do second opinions want to do their own tests--so don't expect an answer necessarily that day, as few places can do an EMG on the first visit.

Places like Mayo are always a days-long process. I'm not a fan, I must say (regarding Mayo)

I'd suggest as close to home as possible--while she can travel easily now, that may not be the case a year or two down the line. Always think ahead.

If she is having ANY leg weakness now, start the process on a PWC-get the order. IT takes medicare forever to get them approved and delivered (MONTHS)

Falls and choking and pneumonia are the big dangers with anyone with ALS--so precautions need to be used--and I'd ask the doctor about them. IF I remember correctly, your mom had bulbar symptoms? (sorry, my memory isn't the best lately)

Most often, unfortunately, ALS is usually confirmed in second opinions--so be prepared for a confirmation of the disease, I'm afraid to say. But, other things should be ruled out! Usually an MRI, lots of labs and sometimes a spinal tap are used to check for other things as well, as many things can cause EMG changes and such.

I can't help regarding the clinics -- never been to any of them, only Mayo.
 
Notme - Thank you for all the info. She has already had an MRI to rule out MS. She did the lab work for ALS and I don't think we have the results yet. She hasn't had a spinal tap though. And you were correct, she currently has bulbar symptoms.

Steve-F - Thank you! I feel like we will be in good hands either way, but also good to know that we can get a 3rd opinion if necessary. Wright looked at my mom's EMG results and said that it showed signs of ALS, but the same indications could be a similar disease/condition. So I'm hoping the Dr. at Wash U is very thorough in testing and ruling all other possibilities out.
 
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