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No that isn’t what I meant. People die with El Escorial probable ALS and rarely with El Escorial possible but the are NOT undiagnosed both El Escorial Probable and Possible are clinical Diagnoses. The El Escorial criteria are research criteria really

Many people are not even told their El Escorial status they are just told they have ALS. There are people here who do not have involvement of three areas and have diagnoses. This is how it should be. Otherwise one could theoretically be paralyzed both upper and lower extremities and if there was sparing of bulbar and respiratory ( so probable El escorial) they would be undiagnosed. They are diagnosed.

The OP by his description is not el escorial possible. I wonder if there was a comma somewhere in Dr Pulley’s thoughts such as clinically, ALS is possible.

Better biomarkers and earlier, easier diagnosis will save a lot of heartbreak for sure. People would get diagnosed or ruled out faster
 
Kevin, thinking of you and hoping for the best outcome.

If it gives you any comfort, we had no such ambiguity when my late husband was Dx’d. I think the Neuro really wanted to call it after the EMG but knew he should not.

I have hope for you.
 
Thanks so much Lenore, Nikki and Karen. There is nothing I can do to effect whatever outcome occurs, so I will try my best to take Karen’s advice the next two months and spend quality time with my wife and daughter.

Lenore, please accept my deep condolences on the recent loss of your husband. I went back and read many of your eloquent posts, several of which brought me to tears. I appreciate that you are still contributing to this amazing forum. Best, Kevin
 
That sounds like a great plan. Whatever is or isn’t wrong everyone should live every day to the fullest. Enjoy!
 
Thanks Nikki. I’m sure trying.

On another topic, I saw the “forum threads won’t load” discussion from Grounded re: the inability to load the site with the Comcast service/router. I have the exact same problem, and have gone through everything Grounded did with no success. Have no idea what is up. Kevin
 
Oh that is strange. Thanks for the heads up
 
Thank you Kevin. I’m sorry you got tossed into this uncertainty but you are doing much better with it than I would.
 
Kevin,

Just keep in mind Dr. Pulley diagnosis and treats many other neurological disorders besides ALS. I'm pretty sure "possible" in his words did not refer to clinical criteria. He will follow you until he finds whatever it is that's causing your symptoms.

When I had my first EMG at Mayo, they said it looked like a motor neuron disease because I had both active and chronic changes and fibrillations with positive sharp waves. They were totally uninterested in fasciculations. They did not diagnose me because all my strength tests were 4+ or 5.....so they waited. However, my EMG indicated ALS and it said so. It took awhile for my clinical symptoms to match up with the EMG.

Have you had a lumbar puncture?
 
Hi Kim. As a fellow Floridian I have followed your posts a great deal., and learned so much. I used to surf a lot as a young man and hit most of the hot spots in your part of the state.

No, I have not had a lumbar puncture. Did you have one as part of your diagnostic process? Kevin
 
Hi Nikki. This isn’t about me (thankfully since I’ve done too much of that lately!) but about the continued issues with logging on and searching. I just got a new modem from Comcast and sure enough, this one isn’t blocking the site. So Grounded was right about the hardware issue and Comcast.

However, like others, the search function only pulls up threads from 2010-2011 or so. Just thought I’d let you and the mods knows. Best, Kevin
 
Thanks Kevin. Did you have the same modem as grounded? If not what did you have? For those of us with comcast it will be good to know what not to get if modem shopping!
Glad you worked it out. And the search issue is so strange. I wonder what the common issue is there. Have you tried a different browser?
 
Coincidentally, Comcast shipped me a new generation modem the other day without me asking. Just coincidence, but it worked. It is their standard issue xfinty/Comcast modem so far as I can tell.

I use safari on my IPad as the browser, but will try another one and see if that resolves the search issue. K
 
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