Consumed with fear and worry

[rmt]

I have reread the report you posted several times and there is no way that is written by a neurologist, let alone a neuromuscular specialist (which is what Dr Cross is). If it is, you should report him to the medical board.

I'm not sure what exactly is going on. If this is the care you are receiving, you should go elsewhere. But almost none of what you report seems like what you would get with actual doctors. Something isn't right.

 

[lisa g]

Steve,
Sorry to hear of the diagnosis. I agree that you need to see a neuromuscular specialist. The wait time at the ALS clinics is crazy. I've been going to UA Miami for the past 4 years. I was scheduled for my next appointment on December 8th but had to cancel it today. The next available appointment is in April. I'm sure that my neurologist won't be happy with me since the last time I was at clinic was in July. Have you tried Mayo up towards Jacksonville? I have heard that they're very good.

 

[lisa g]

Steve,
You might want to call UA Miami again and speak to Roberto Fernandez who does the scheduling. I canceled my appointment for December 8th at 12:00. I would try to see Dr Benetar for a second opinion.

 

[swalker]

I am very sorry to hear of your diagnosis. I have followed your story since you first posted, and was hopeful things would go in a different direction.

As others have suggested, be sure to get a second opinion. I think that is very important for a diagnosis that has such consequences.

Steve

 

[lgelb]

The EMG only concludes that a diffuse process such as MND must be considered. It is the neurologist who seemingly has dx'd it and I agree the note in which he reports this is suspect at best. I also agree with rmt that the bio of Dr. Cross doesn't match up with this report at all.

 

[Clearwater AL]

Of all the EMG impressions I've read over the years... this the first I've
seen with just a signature. No doctor title... no Neuro facility, no conclusion.
Maybe I've missed one or two. Again, it's a first for me.

 

[AnxiousStatsGuy]

Steve,

It feels odd to even be asking bur I agree with the many comments suggesting that your experience has been... weird... to say the least.

<link to doc photo removed; construed as commercial mention>

 

[SteveMiami]

after getting my diagnonsis I was able to get my appointment moved from October 2024 to this coming Tuesday (!) so obviously a huge improvement, at the University of Miami’s ALS Center. I’m meeting with a neuromuscular specialist to go over all my tests, labs and information and see if they want to test for anything additional (ie lumbar puncture) or redo any other ltests, and then we go for there. if they agree with the diagnosis they will get me into the ALS center right away. Hoping they find something else amiss. My left hand is feeble now it’s starting on the
right.

I got about 40 new labs done earlier this week, which seemed outrageous at the time, but a lot are coming back out of range. If these are important or not is beyond the scope of my understanding, so I’ll be bringing it with me to University of Miami on Tuesday.

 

[KimT]

Steve,

I've been following your story. I'm so glad you got in Tuesday. You can probably expect a clinical exam. Most likely, they will schedule an EMG. Don't be surprised if they want more blood. Mayo about drained me dry.

 

[SteveMiami]

Hi there, I have an appointment today with a “genetic counselor” with genome medical in order to learn about genetic testing or hopefully even order it.

I was wondering if anyone has used this service. I’m unclear if this counseling session is just to learn about genetic testing but at the price tag of $200 I’m hoping they can actually order the testing for me, but I would expect that would need to be a doctors order so I’m a little fuzzy on how this all works.

Thanks for any info

 

[Nikki J]

If it isn’t too late I would cancel. UMiami must have a genetic counselor who specializes in MND and related diseases. General genetic counselors have little idea. One of my cousins was mistakenly scheduled with an Hd specialist ( and HD has much in common with c9 as it is an autosomal dominant repeat expansion). They still had to reschedule as the Hd person did not feel prepared to counsel MND. MGH has a couple. It is also possible and I think usual for the initial ordering to happen from the diagnosing doctor. Then to see the counselor for results. Not ordering it when requested was one of the red flags about your last doctor

 

[rmt]

A quick Google search tells me that Genomic Medical just does the counseling. Any testing will cost more and be done by a third party. I'm confused why you would do this when you have an appointment at an ALS clinic tomorrow. They would be the ones to talk to about genetic testing, not a private company that didn't specialize in ALS.

 

[Bestfriends14]

Hey, Steve. What is your primary reason for paying for your own genetic test when you have an appointment at an ALS centre tomorrow? It seems a waste of money, and it will take several weeks to get the results back.

 

[lisa g]

Steve, Miami will order the genetic testing there's no need for you to do it privately. When it's ordered through the neurologist it's no charge for you and yes it will take a couple of weeks to get the results.

 

[AnxiousStatsGuy]

Steve,

If you were able to make it to your appointment today, how did it go?