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OK i just found this and I quote "These things all hastened his progression, caused a lot of pain and PALS do not heal when muscles or tendons (which attach to muscles) are injured. " from another page. UMMM, so he those injuries will NEVER be treated..this is it...he will be in pain and that is it? OMG.... HYSTERICAL :'( How is this happening? OMG, NOOOOOOOOOOOOOOOooo :'(
 
First, calm down. While the muscles won't heal, there is no reason other issues can't be treated by a doc that is familiar with ALS. There are several surgical procedures we pals have done.
 
DebraJean14, You have written (quite a bit too) just within the past few days and 3 today,

Ok,

("The neuro said he had the "tongue symptom of als".) >Was an EMG done on his tongue?


("For some reason, I am still hopeful it is NOT als....") >Did he receive a confirmed diagnosis or was the Neuro unsure?

("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).

("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.

("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.

("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.

("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?

("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!

("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.

(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.

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.

PS. There are CALS on this Forum who are some of the bravest people I have ever read about.
 
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.
{at this time, I am terrorized to read the stories; I am trying to get there, thus why I posted. } {Also, I begged God, to give this to me as I am already sick with MS, etc.; I am very brave, IF it was me; I have issue with losing the love of my life, when we are about to marry, etc I could go on about myself, but that is silly. I am here to get questions answered to HELP HIM}

{I did not realize that there was a limit to questions, I did not mean to offend anyone; IN talking to people on the forums, I was told to vent, scream, rant. I def do not want to break any rules on this forum; I need help to be able to help HIM best. Are there any suggestions as to where I could go to seek help to 'get myself, together, IN case the ALS DX, is correct, BEFORE it is finalized by the ALS expert at Columbia?}

{thank you so much for taking the time to answer me, I do appreciate it, greatly!}
 
In addition, I am afraid to post again, so I guess, I will await further instruction as to if I can, if i broke rules...etc. I did not mean to.... :'( Is there somewhere that has the Rules to posting on this forum?
 
DebraJean, think Clearwater was telling you to take a deep breath and be sure this is diagnosed as ALS. And remember, everyone here is LIVING this disease, either as a caretaker or as an ALS sufferer. We don't have time for hysteria, because our plates are too full. You can rant and rave- we all do, but IF he truly has ALS, you need to dig deep and find courage and strength that is needed for this journey, or you won't be much help to him. Having MS is a double whammy but----you are a woman so you can do this! Give yourself time to adjust, talk to a good friend, your pastor or someone at the local ALS office. No one here is unsympathetic, as we are in the same situation (confirmed ALS). A suggestion- keep your messages shorter. PALS have limited energy so you will get more positive responses with shorter posts. Good luck. Donna
 
Debra, wow so much you are trying to cope with at once.


I'm going to ask the mods to move your thread to the CALS section. The PALS do read their and participate, we love them doing that, but it is other CALS you probably need to rant to just now.

I'm sorry I can't answer each point, all I can say is it is my thread you read about the torn shoulder tendons.

My Chris already had failing hands and arms when he fell and injured that shoulder. He was no kind of candidate for surgery, and the ALS prevents muscles from healing if they are injured. Some PALS do have surgery for certain things, but it depends on the injury/issue and the state of their breathing.

I would highly recommend you get to your doctor and talk about anti depressants and counselling. I did both as a CALS and still see my counsellor. You need help and support, being a CALS is really tough and none of us do it alone.

We will do our best to support you here as well. We can't always answer quickly as we are dealing with our own issues.

There is no limit to questions, you can rant and fall apart all you need. If you write really long posts all jumbled together, we will have a harder time reading and replying to them, but if just need sometimes to rant and get it out, well so be it.

I know it all seems so unfair, we all have dealt with that one too.
 
Dear Clearwater, Cheerleader and Affected, Thank so much for answering me. I think I get it now, as far as the rules. I will not post long messages with rants and raves, etc. I really am on this forum to help him, my BF, that I promise. I will take all advice provided and find that strength, again. Believe it or not, I have cared for other family members that had fatal-type illnesses. I took my loved ones through that until their journey was over, I did find the strength. I believe I am having trouble now, because it is my BF, not a parent or grandparent, etc., that is sorta expected to need care at some point for something. This is why I came to these boards, for advice. I thank you so very much for all that you have given, I am going to dig deep and find that strength, and Yes, I am afraid that I will not be "good enough" to help him the very best because I am also ill; that is what scares me the most, that I will fail him. My BF did call Columbia today and the doctor has still not reviewed his file at all; The woman he spoke with stated that she would email it straight to the doctor so that there is attention given. My BF has chosen to wait a couple of days to call the original DX neuro. Do you think that is ok? Is there anything else I should be dong at this point?

ANd i will look also to post under CALS, instead of PALS... Thank you for taking the time to answer me, with all that you are all going through or went though. I am very lost and trying to find my way; the way to do the very best for my BF. :) xo
 
This is a silly question about forum buttons: once I post is there a way to edit what I posted. In the last post, AFTER i posted, i realized i did not separate points.. and all is a bit jumbled. Sorry! I will get better at this!
 
DebraJean, no need to apologize for anything! You are trying to work through tough stuff and we'll be here to talk to. And as far as worrying that your efforts won't be good enough, I still worry about that EVERY day after 2 years of knowing my hubby has this monster! But we do all we can, in the best way we can- and it will be good enough! Every day I pray for strength to be the cheerful, loving CALS that my husband needs and deserves. Hugs to you. Donna
 
Hi DebraJean, you're doing better now. I have taken several relatives, including my wife of 20 years, to the Pearly Gates of Heaven. It's part of life, as you know.

You'll need all the emotional strength you can get.

I can't sugar coat this. If indeed his ALS is confirmed, then as a young woman, you're going to lose your boyfriend, the love of your life, in just a very few years, maybe less. If you're going to help him, then you're going to need emotional support to do that. Many of us, including myself, take a few pills and see therapists to help us do the best we can. I recommend you see a psychiatrist--they know best how to handle the anxiety and emotional pain and depression and anger. A psychiatrist will probably also send you to the appropriate therapist.

EDITED TO ADD: The "edit" button is available for a few minutes after you post so you can correct any mistakes you see. After a bit, the edit button goes away and your post is permanent.
 
>It's part of life, as you know.

Ditto that!

IIWII ("It Is What It Is!") ...


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Max - Monday, October 06, 2014 11:47:22 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
We will be here to help support :)

I think you have to be a member for a little while before you get the option to edit posts for just a little while after posting. Same time I think as private messaging kicks in.

I appreciate how much you are going through, and your fears. We do understand.
 
Don't jump to conclusions darling. I've had ALS for eight years and I can still talk eat and raise hell. Remember that the only thing about him that is changing are his muscles. His heart, soul, and character are all still there. Every single patient progresses differently. I know this is hard and I know this is frightening. We do understand your fear and terror, but just remember he still the same inside.
 
Hjlindley, what a wonderful reminder of what is really important! Thank you. Please come on the forum more often - your story is one of hope, accompanied by wisdom. Donna
 
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