What should I ask?

[aurore]

My dad was diagnosed with ALS yesterday. Right now the only symptom he has is speech and that is only some days. It just doesn't seem like the right diagnosis to me since he has had the speech problem since August and some days there really is no problem. The doctor also ordered a test for lyme disease but didn't think that was what it was. Dad does have a herniated disk in his neck but the doctor said that couldn't be the problem. He has one nerve in his throat that is dead. My mom couldn't tell me what the emg and nerve conduction study results were so I was going to ask for those at the next appointment which I will be going to.

What else do I need to ask? I want mom and dad to get a second opinion but I don't think they will until after this next appointment.

I have watched these boards for a few weeks. Ever since mom told me that the diagnosis was a possibility and I have to say that I really admire everyone's courage. I frankly don't know how you all stand it.

 

[BethU]

Aurore ... I'm so sorry for your dad's diagnosed. Hopefully, he will have slow progression, if it is ALS. It's always good to have a second opinion.

When is the next appointment? When you ask for the test results, ask for copies of the whole tests, too, or at least a copy of the doctor's written report. If it is ALS, you will discover that handling the disease becomes a question of logistics ... your dad will have to make "lifestyle" changes, and learn to do physical things differently than before, but people are living very full and rewarding lives with ALS.

Take good care of yourself and your mom, too, as you help your dad with this.

 

[ptich]

Slurring only is a UMN symptom, and this kind of ALS often progresses very slow. There is a lady on this forum who have been slurring for at least 7 years before more serious symptoms set in. So there certainly is a good chance of slow progression, if it is ALS at all.

What kind of tests made the neuro think it is ALS ?

 

[brendapals]

hey there aurore,
I'm also in KY- about 170 miles or so west of you. Welcome to our big happy family! I'm sorry your dad got the diagnosis, but beth is so right, with some lifestyle changes, he can live a very good life.

I was diagnosed on 6/3/08, my only problem remains in my speech, very, very slurred. I usually tell people it's just my southern drawl!

Another thing, if he just got that diagnosed yesterday, make sure someone calls the ALS Association and the MDA Association. You will find a lot of support from both organizations.
Ask away on here, I'm sure you'll find lots of support,
take good care,
brenda

 

[aurore]

Thank you for the responses. The next appointment is January 9. Mom is a little fuzzy on what all the tests were but I know they have done an MRI, MRA, EMG and nerve conduction, as well as bloodwork. Unfortunately, she can't tell me what the results were...she thought that there wasn't really much on the EMG and that the MRA showed a herniated disk in his neck but I'm not sure she has everything right which is why I want to see all of the tests (I'm not a doctor, but I have had to read medical records for other things and I can use google with the best of them)

I would really like for them to get a second opinion and I don't think distance is a problem so my next question would be, where is the best place to go for a second opinion? The doctor (Kasarskis) who did the diagnosis here is with the only ALS center listed for KY (UK at Cardinal Hill)...

 

[John1]

My dad was diagnosed with ALS yesterday. Right now the only symptom he has is speech and that is only some days. It just doesn't seem like the right diagnosis to me since he has had the speech problem since August and some days there really is no problem...

Hi Aurore,

Ptich is right that your dad is only showing upper motor neuron symptoms and such cases are often slow progressing. As well, it it quite common for ALS' slurring symptoms to come and go over time unlike weakness in the limbs for example. I am a bit surprised they were able to diagnose him with only the one symptom though. The EMG is usually the most diagnostic tool for ALS and when I was having only slurring problems my first EMG was negative. Every case is unique though. Perhaps you could go with your dad to his January appointment armed with questions. Depending on your opinion then, you could press for a second opinion.

 

[KevinMDA]

MDA Can Help

Hi aurore

As Brenda mentioned, the Muscular Dystrophy Association is there to help. Please contact your local office and get your dad registered with them.

MDA helps pay for wheelchairs, leg braces & communication devices, as well as clinic visits, support groups, and more.

MDA is funding some terrific ALS-related research right there at the University of Kentucky.

Please visit our website at www.mda.org or www.als-mda.org

Thanks and God bless,

Kevin

 

[tmasters]

Hi Aurore,

With ALS a second opinion is very important. And this is not just me saying so. Check out the ALS Association website. They have an article on Second Opinion:

http://www.alsa.org/patient/opinion.cfm

The article states "Some neurologists estimate that as many as 15% of the people diagnosed with ALS have been incorrectly diagnosed."

Good luck with your dad, and keep the faith,
-Tom

 

[ptich]

Yes, I think it is very typical for UMN symptoms to come and go, while LMN symptoms come and stay.