Every month that goes by without signs of progression definitely shifts the balance away from ALS, so I'd basically ask the neuro to lay out the specifics that she's basing her diagnosis on outside the bulbar region. As you know from reading out PLS forum, it's not unusual for UMN only symptoms to spread very slowly, over time periods measured in years, rather than weeks or months.
I'm guessing that the neuro is repeating the EMGs every six months in hopes of catching the LMN problems she's expecting at the subclinical stage. Let's just hope and pray for another clean EMG so we don't have to check off anything else on the ALS checklist.
hi I haven't posted in awhile. Here's an update been 15mnths my Bf symptoms have not changed. speech is still the same no other symptoms. Going for 6mnth EMG Tues. Still wondering if it still comes back neg is bulbar ALS still a possibilit? Last time we saw the neuro in July she said ALS and PLS high on the list. I'll let you know the results.
Really not sure, it was a scrambled mess, she said dr C will see you this coming Tue, the 18th so I am not really sure, hoping they call in the morn, but the message says they don't return calls on tue morn because they are in clinic. How did your dinner go?
thank you too. i do understand where they are and are not comeing from i just dont understand if they are so darn hostile towars the people on do i have als? they even have it here or why do they even click on my status if the ssee who it is by i got inboxed now iam someone else the other day..... haha... its juts hard bc i want someone to actually talk to my friends think iam crazy and they hate even talking about it they say it hurts to obad to think something is wrong and my hubbie well he is always out of town everyday and weekend so feeling bad plus some anxiety. duh lol and not being able to find job to keep busy no kids.. i feel useless and stuck sometimes u want to talk to people rather i have it o not you know?. thanks again and thank GOD your hubbie probaly dont have it do u know about pls?
i was looking at your new post you made when you and your boyfriend went to the ent and i must say it brought tears too my eye and i know i dont know you i feel like i know you just by following you story and how wonderful how absolutly wonderful wonderful news your ent must be smart bc it would seem he would have somthing else show up by now and i hope and pray that the new lease on life continues... i have read a lot on pls (only on this site) and people live 20 or 25 yrs and by that time IFFFFF it is pls there would be a new med out or some sort of therap a cure maybe??.. not sure about that one tho but a modifing diease drug like in ms is great!! i dont think i quite understand pls that well my understaning is its bad but most dont end up like als'ers if it was to never turn into maybe its not even pls.i just cant express how much gratitude and happiness i feel for u and both ur boyfriend
you all are so young and love each other and ur a great advocate..wonderful you are.
Kathy has the opinion of two specialists stating that she does not have articulation problems. Kathy has the opinions of two specialists stating that she does not have any symptoms consistent with MND. She ought to listen to them and look toward other causes for her "problem."
As for you, I think you are a nice lady with a huge case of denial about what's wrong with your boyfriend and, like most medical paraprofessionals, an overinflated sense of your own training and experience. I'm willing to cut you some slack on the former, but I will challenge you on the latter. Let me know when you graduate medical school and complete a neurology residency. Then you might have something to say that I might be interested in.
In the meantime, good luck to you and your boyfriend.