DebraJean14, You have written (quite a bit too) just within the past few days and 3 today,
("The neuro said he had the "tongue symptom of als".) >Was an EMG done on his tongue? {No, there was no EMG of the tongue done; There seems to be an apparent "tongue" symptom of ALS that my BF has; that is what I am asking, WHAT is that symptom? I was there, as any know, when you hear a DX like this, you are still paying attention, but are in shock}
("For some reason, I am still hopeful it is NOT als....") >Did he receive a confirmed diagnosis or was the Neuro unsure? {The Neuro said it IS ALS, via the ruling out of anything else; the EMG results, and upon physical exam; The neuro then said to get a second opinion at Columbia. That was on 9/17; there was a problem from neuro office to Columbia with a fax. We thought something may be wrong and called Columbia, they never got said fax; Neuro office refaxed 7 days Plus ago. We are both having trouble keeping track of the time, we re upset; So this is the normal waiting time? }
("His reg doc thinks that the stem cell treatment may work but my BF insurance does not cover it.") >Without a confirmed diagnosis (which from all you've written hasn't happened yet) that was a "stupid" statement by the Neuro (as you're referred to others). {after the neuro, we also went to his primary care physician, he is the one whom spoke about stem cell treatments}
("WE await a call for a second opinion via an ALS expert doc at Columbia in NYC. at first, the diagnosed neuro sectary send to to WRONG fax number....STUPID DUMB *****! I mean people's lives on on the line! (ok, anger out) My b/f called yesterday and they did get the proper fax now. The doc is looking it over to see if my BF meets the "protocol") > It's only been 5 days since you/he has called. You're very lucky all these appointments are happening as rapid as you've written. { I did not realize this at all, thank you; How long will does it usually take; I had assumed it would be faster DUE to the course of ALS }
("WE await a call for a second opinion via an ALS expert doc at Columbia in NYC. at first, the diagnosed neuro sectary send to to WRONG fax number....STUPID DUMB *****! I mean people's lives on on the line! (ok, anger out) My b/f called yesterday and they did get the proper fax now. The doc is looking it over to see if my BF meets the "protocol" WTF is that?") > It's apparent there still is some question and the first Neuro did not make a confirmed diagnosis. {The Neuro said it IS ALS, via the ruling out of anything else; the EMG results, and upon physical exam; The neuro then said to get a second opinion via an ALS expert at Columbia.}
("We are awaiting to go to the ALS in NYC to start to get into a group....") > He hasn't seen the ALS Clinic Specialist yet. {No, we were told to get my BF into Columbia within 2 -3 weeks by Neuro , that was on 9/17 and if we were not in yet, to call Neuro back; We are calling Neuro today}
("the Neuro stated my BF cannot have surgery to correct the injuries, due to possible breathing issues during surgery;
he did also go to pulmonologist, because He snores and I wanted him to have a sleep study...the pulmonologist said that it was not necessary... ?") > The pulmonologist didn't feel a sleep study was necessary but his breathing difficulties are too serious for surgery? {sorry for the confusion, The neuro stated that BF cannot have surgery due to the fact that there may be breathing issues WHILE under anesthesia, ESP, for ALS patients. } Pulmonologist said not to worry about a sleep study at this time and wait for all that until after the ALS specialist, he kinda brushed off, more questions}
("The neuro did say that my bf DOES have a fully torn rotator cuff and that is probable that that is when ALS started..") > ALS does not start from an injury. Nope! {Again, Neuro stated that BF was probably injured BECAUSE ALS had already started and made his muscles in his arms weaK, thus why he was injured doing the same job he has for 15 years; BF does commercial door construction}
("OK i just found this and I quote") > I noticed your post was 4 AM (something) EDT this morning, until both of you really have a confirmed diagnosis from the ALS Clinic... stay off the internet. {I am here because I find info to seek guidance on how to help the love of my life figure this all out; Yes I am panicking
But i would like to bring to your attention that the quote I quoted was from ANOTHER board from THIS forum. I am trying to learn how to work all the buttons, etc}
(OMG.... HYSTERICAL :'( How is this happening? OMG, NOOOOOOOOOOOOOOOooo :'( ") > This is the best proof that you need to stay off the internet. There are members on this Forum you are being very inconsiderate to post hysterical rants like this. You've apparently read everything but their stories in the other sub-forums. { I am sorry, I would NEVER want to offend anyone at all nor, ever be inconsiderate in the least. I was told I could let it out on here; if that is not the case, I am sorry. It was 4 am, because I cannot sleep, so i figured why just toss and turn when I could be TRYING to find out more information for My BF, whom is in so much pain, in every sense..}
IF your BF is to be a PALS... you better get yourself together if you're going be anything near, or come close to being a CALS. {I agree with you, THAT IS WHY I AM HERE! I am in shock, fear, denial, and I am here to try to start getting myself together, so I can be the best CAL I can be for him, IF NEED BE}
PS. There are CALS on this Forum who are some of the bravest people I have ever read about.