Consumed with fear and worry

[Clearwater AL]

Steve, just curious.... you went for your second EMG today. How did that go?

Post the Summary/Conclusion/Determination at the bottom of the report
when you can.

 

[SteveMiami]

The neurologist took a long time and did a very thorough EMG. He said the findings were consistent with ALS, especially when combined with all my symptoms. I meet with the referring neurologist tomorrow to go over the results. I don’t have them in hand yet but will post them when i get them.

 

[Bestfriends14]

Yes, please post the summary/conclusion of your EMG, where the neurologist has stated he thinks this is ALS.

 

[SteveMiami]

I will post the whole report. And whatever comes of my meeting with neurologist.

 

[Bestfriends14]

Steve, how did the meeting with the neurologist go?

 

[SteveMiami]

My neurologist diagnosed me with ALS and started me on Rilutek. Emg findings and diagnosis notes attached. I’m turning my focus now to finding a neuromuscular specialist to confirm diagnosis. I am looking outside Miami and even Florida as needed since the wait times are months locally.

 

[Nikki J]

I am sorry to hear.
You are absolutely correct that you need a second opinion from an ALS specialist. I read the note that the neurologist is contacting UMiami. Sometimes the wait is significantly shorter when there is a neurologist contact with a provisional diagnosis. If not you might consider Mayo or Holy Cross. Out of state Emory. Or of course you could try Hopkins or MGH which would be accessible by direct flights.

Did the neurologist order genetic testing that you want? It does not require an ALS specialist to order

 

[SteveMiami]

Thanks. He dismissed the genetic testing and said if I get in a clinical trial that needs it, they'll test for it. He's very linear and by the book.

 

[Nikki J]

Or not up with best practices. Genetic testing is recommended by the experts for everyone. Aside from anything else sod1 has a treatment and occurs in about 1% of SALS Sponsored genetic testing | ALS Identified™ Program | Invitae

 

[Bestfriends14]

I'm sorry to hear of your diagnosis. I would, as Nikki said, get a second opinion by a neuromuscular specialist. I still do not see ALS in your picture, especially because you passed clinical exams and had a clean EMG just a few weeks ago. Your symptoms do not point to ALS, either. Further, the report that has been written is rife with spelling mistakes and poor grammar. That's very odd for a highly educated neurologist. I mention this to assuage your distress (a bit, at least) and for you to get another opinion from a neuromuscular doc. There have been folks who have had an initial diagnosis overturned.

On another note, my hubby was automatically given genetic testing when he was diagnosed. What this doc said doesn't make the least bit of sense and isn't in line with general practice.

Please keep us up to date.

 

[SteveMiami]

I think my Neurologist is very experienced (40+ years) but I also don’t think, to your point, that he keeps up with the latest information - and he doesn’t see many ALS patients. I will pursue this testing. Thank you.

 

[rmt]

The report doesn't sound like any neurologist report I've ever read. Honestly, it sounds like it is written by someone who is not a physician. Plus, the mention of primary lateral sclerosis makes no sense if your EMG is consistent with ALS.

I'm having a hard time with the very odd Radiology report you had and now this very odd neurology report. And with your "highly trained" neurologist not seeming to know the standard of care for ALS. It doesn't seem like this is what you would be getting at a reputable medical facility.

If my husband had received this type of report and advice, we would have certainly gone elsewhere for a second opinion.

 

[Bestfriends14]

Steve, I looked up the name on the report and could find no neurologist who goes by that name. Even the signature doesn't read like neurologist. Doctors are very proud of their education and list the accreditations after their name. Yours has listed none, which is extremely odd. To second RMT, to have a diagnosis of PLS and then to add ALS doesn't make medical sense.

 

[SteveMiami]

The doctor who did the emg is Dr. Jonathan Cross in aventura florida. Knock yourself out.

 

[Nikki J]

Yes. You need to have a clinician order it and you should have genetic counseling ( which may happen through invitae not sure)