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DebraJean14

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Joined
Sep 24, 2014
Messages
17
Reason
CALS
Diagnosis
09/2014
Country
US
State
NY
Hello to all, My loving B/f was diagnosed last wed, with ALS. I am sick over this. He also has a fully torn rotator cuff, in one shoulder, the other shoulder has 2 tares, he has some neck issues... They just did all the blood work to rule out other things...he had a brain MRI, it was normal, he had an ssep , that was normal, but the EEG shows ALS. Due to his shoulder injuries, his hands are like "lobster claws". He was a very Built man, his arms are now shrinking...We thought it was from his shoulder injuries. The neuro said he had the "tongue symptom of als". We are awaiting to be accepted at the ALS center at Columbia. He is in alot of pain...but has been since he injured himself last august. (he never got any surgery or treatment for his shoulders) and now the neuro said he cannot have surgery to correct the fully torn rotator cuff.
For some reason, I am still hopeful it is NOT als.... Maybe I am in denial, IDK...he legs are fine and still muscular....he walking is fine...his speech is fine...he did lose 35 lbs since his injuries of last august...but I know muscle weighs more....and well I am so broken hearted that I CANNOT believe this. He is 41.... ANY ADVICE, please? ALso are there OTHER tests for ALS? I am so confused.... His reg doc thinks that the stem cell treatment may work but my BF insurance does not cover it. As i said, I am still thinking it is his shoulder injuries.... How do I grasp this and/or what other tests can PROVE to me and him that this is ALS?
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
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PALS
Diagnosis
11/2012
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US
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CO
You made a good first step: coming here.
1) read the Stickies at the top of the General Discussion About ALS/MND forum. See the attached graphic.
2) connect with your local ALS Association ASAP. Probably these folks: ALS Association Greater New York | New Jersey | Long Island | Hudson Valley

The diagnostic test was probably NOT EEG but an EMG. Fairly definitive.

Others will weigh in with more suggestions.
 

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LaurieCALS

Active member
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Aug 24, 2014
Messages
61
Reason
Lost a loved one
Country
US
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Hi Debrecen,

Welcome to the forum. You'll find a bunch of nice people here who will offer you help and hope.

IMHO, the doctor is probably not wrong. I'm would imagine they are very sure by the time they tell you.

You and he are grieving: anger, denial, bargaining, acceptance and depression. Not necessarily, and not in that order. It's just a circle you go around many times.

For now I would discuss it with him to whatever level he wants. Let him lead in the conversation and give his feelings validity. Read up here as much as you can because there's a lot to learn. Yes, some of its painful but some of it's heartwarming.

My PALS was an ex bf, someone I had dated for several years but had been broken up with for 5 years. Unfortunately, his family never stepped up.

Come back often Debra. And at some point, he might want to come too.

*hugs*
Laurie
 

Atsugi

Legendary member
Joined
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5,187
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There is no single test for ALS, per se.

Once they've tested for everything else, and the EMG is done, then they can rule out everything except ALS.

The EMG, plus a certain pattern of symptoms, leads to a diagnosis of ALS.
 

LaurieCALS

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Country
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Sorry DebraJean, I guess I just type too fast!
 

cheerleader

Senior member
Joined
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Debra, there is no cure for ALS. Stem cell is still in the research phase and if his regular doctor said it would help, suspect he is not current on ALS. So don't lament that his insurance won't cover it. If anyone on this forum is involved in getting stem cell treatment, please holler! Please read the sticky on anticipatory planning to help guide you on what to do after the shock wears off! And as Mike said, ALS is a process of elimination. I would certainly be sure everything else had been ruled out, and most neurologists tell you to get a second opinion. Good luck. You both will find support here - an elite and unwanted club! Donna
 

tinyandme

Distinguished member
Joined
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Messages
219
Reason
Lost a loved one
Diagnosis
10/2013
Country
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State
On
I am so very very sorry you are here my dear. I too hoped and prayed it was anything but ALS for my boyfriend but alas it was not to be. I hope you are luckier. If not..this forum is fantastic. I learned more here from other caring for loved ones then anywhere else. Please feel free to cry, scream, rant, ask anything..were here xo
 

DebraJean14

Member
Joined
Sep 24, 2014
Messages
17
Reason
CALS
Diagnosis
09/2014
Country
US
State
NY
THank you to all that answered! I appreciate it. IT took all i had to come back here...sorry for that...I am in the shock, denial, anger stages....after weeping for three weeks. Now i wanting it to just go away. I KNOW that will not happen. WE await a call for a second opinion via an ALS expert doc at Columbia in NYC. at first, the DX 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? Protocol...ummm, isn't the ALS diagnosed enough. There are closer places, but original neuro wanted us to go to this guy, so we wait. IN the meantime, I am very sad; I have MS....HOW CAN THIS BE? He is younger than me.... WE both had really rough lives....and I went though a Horrid divorce. He is my PRince, my happy ending....we are building a life together..we are in a house he was just going to buy...now he has to go on dis...so we will NEVER make buying the house. I am already on disability. Most thing, he is pain from shoulder injuries....that he NOW cannot have surgery for. I am always in pain..but have it controlled. I feel like I a going to lose him any second.... I think i will just lose it if that happens... We are awaiting to go to the ALS in NYC to start to get into a group....etc... THIS IS KILLING US. We do not want to be away from each other...we want to marry..... :(

What do the groups do? Is there help for him? I am so very confused....:confused:
 

DebraJean14

Member
Joined
Sep 24, 2014
Messages
17
Reason
CALS
Diagnosis
09/2014
Country
US
State
NY
PS//// How do i get to the "stickies" that some of you are referring to....I cannot find them... ?
 

Atsugi

Legendary member
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Messages
5,187
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Lost a loved one
Diagnosis
12/2010
Country
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Debra Jean, to find the sticky posts that contain a lot of advice, go up to GregK's post number two just below your original post, and click on his graphic. That shows you were to find the stickies.

The group in NYC is designed to support you, give you information, and help you both deal with the disease.

You're wise to get a second opinion. But the EMG is the gold standard test. A neurologist who specializes in Motor Neuron Diseases should do some simple tests, then get labs and an MRI to rule out anything else, then perform an EMG to confirm ALS.

Sorry you're going through so much all at once. The disease is fatal. No dancing around that. The stem cell therapy and other therapies are being tested but there is no cure yet. Sorry. I don't mean to be cold, but I must say that we've all been through this and survived. There is a semi-happy life after diagnosis. It just requires focusing on one day, one hour at a time. PALS and CALS learn to live for the "now," and focus on the good things each day can bring.
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
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Debrajean, there IS life after this diagnosis. It will be different but you will find joys. One day at a time and look for the small things that can make you smile. You found your prince and he is here now! Enjoy today, my dear! Hugs. Donna
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
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Debra it is ok to be angry and sad. believe it or not, those feelings will fade and you and your bf will laugh again. you are in shock and you are grieving--you are loosing the future you had wanted. my favorite saying is "life happens while you are making plans"

you will learn to live in the present and enjoy each day. who knows how much time he has--so now is the time to do the things you really want. if you want to marry than do it. if he wants to take a trip--go now.

be kind to your self and to him right now--these are the tough days but it will get easier.

Barbie
 

DebraJean14

Member
Joined
Sep 24, 2014
Messages
17
Reason
CALS
Diagnosis
09/2014
Country
US
State
NY
Thank you to all that answered me! :) I had to have emergency oral surgery so I have not been on...It was a couple of rough days. BUt I am back. Sadly, I KNOW that ALS is fatal :( I am out of my mind because of that. I am trying to have hope and try to be positive. (umm, yeah, it is really not working...I feel as if my life is over; I am trying to get b/f to do things and he just does not want to; he is severly depressed and as of now still will not seek coundeling not take any meds for depression that neuro.Gp want him to) My question are HOW do you know what stage a person is at? How do the docs know that. This all started with a severe fully torn rotator cuff...that is proven by MRI... THIS IS WHY I AM SO CONFUSED! He has injuries, was attempting to get them "fixed" and there seemed to be a "run around" . I think that was NOT the case, but maybe they were mentioning ALS to him and he was scared to accept? IDK. But what I do know is DUE TO THOSE injuries, he is constant PAIN...the Neuro stated my BF cannot have surgery to correct the injuries, due to possible breathing issues during surgery; but as we await for Columbia to call us _ THEY STILL HAVE NOT! My, BF is calling the nuero tomorrow to talk to him cause this is crazy. Isn't there things they can do to treat injuries? I mean, because you have ALS, does that mean you do not get treated for other injuries? His EMG was the test that led to the DX and the physical exam and something with the HIs tongue during neuro exam... something with "rolling of the tongue" What does that mean? I understand that quality of life is important and to NOW take things day by day...but in the meantime, MAYBE we could do that, IFFF a doc would say what CAN be done about his shoulder NOT just what CANNOT... I had this same injury but only partional torn and I had to go to physical thereapy that included massage thereapy, range of motion..etc...heatm ice...LATER, much later was the physical therapy part...which I understand would prob NOT be good for a ALS patient.... The neuro did say that my bf DOES have a fully torn rotator cuff and that is probable that that is when ALS started..which is now 14 months ago... :(
 

DebraJean14

Member
Joined
Sep 24, 2014
Messages
17
Reason
CALS
Diagnosis
09/2014
Country
US
State
NY
PS, since i have met him about 5 years ago and we started dating...he gets this cough...a phlegmy cough...he takes Claritin -D and is quiets...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... ? Again, I am NOT understanding why other injuries or possible medical issues are NOT taken care of? Is this the norm; Should I accept that this tremendous pain that he is in from his shoulder injuries that are "lobster-clawing" his hands is what he will have to live with? Or is lobster claw a symptoms of ALS? ALso, I guess, I am asking what to look for? He is very tired, he does not sleep that much, never did... IS there FAST onset, meaning will I wake up one day and he will just not be able to walk, like that I know can happen in MS: it has happened to me a couple times, then I "go back to myself" after a while...meaning the "episode of MS quiets down" and I return to Me again? I AM SO CONFUSED. Once the second opinion is had do we have to keep going to NYC...we are way out on LOng Island.... I know that they state to be concerned about quality of life. I KNOW that he will freak if he has to keep going into NYC ; It takes a toll, even when we have gone TO NYC for entertainment... What happens after he gets the second opinion, if the second nuero agrees,,,,,which i do understand, will most likely be the case... :(
 
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