Old 10-04-2018, 01:29 PM #31 (permalink)
Bestfriendstilltheend's Avatar
Senior Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 537
Bestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the rough
Bestfriendstilltheend Bestfriendstilltheend is offline
Senior Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 537
Bestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the rough
Default Re: My husband believes he has Als

Bella,

You are doing an incredible disservice to your husband by continuing to post here. Nothing you continuously write leads anyone on the forum to all of a sudden say "Aha! He does have ALS!". By you doing a disservice to your husband, I do not mean to sound blunt or cold, but you're going down the wrong path being here. Every minute you spend here, every post you make, is time taken away from actually helping your husband to find out what is truly wrong.

He's been cleared of ALS, and you've been told it doesn't sound like ALS, yet here you still are. It is really time for you to move on from the forum and truly help your husband by finding out what his symptoms could be.

I'm sorry you have poor medical care. That must be so frustrating. I honestly wish you best in looking to find out what ails your husband. It's not ALS and that's a wonderful thing. My husband, who actually does have ALS, would be envious.
Bestfriendstilltheend is offline  
Old 10-04-2018, 01:54 PM #32 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: My husband believes he has Als

Whatever level of care you have the question asked of doctors should always be what is wrong with me? If you are fixed on a diagnosis that they don’t think is the answer it is going to stand in the way of a diagnosis
Nikki J is offline  
Old 10-04-2018, 02:09 PM #33 (permalink)
BellaBells's Avatar
New Member
 
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
BellaBells BellaBells is offline
New Member
BellaBells's Avatar
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
Default Re: My husband believes he has Als

You are all right in so many ways and I really do appreciate all of your responses. We have had almost every single thing tested that I know including mri's ck's and blood test stays, cbc's and nothing has come of it. we have two young girls and I really dont want to lose him. No one has a reasonable explanation so I'm just scared and worried
BellaBells is offline  
Old 10-09-2018, 02:39 PM #34 (permalink)
BellaBells's Avatar
New Member
 
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
BellaBells BellaBells is offline
New Member
BellaBells's Avatar
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
Default Re: My husband believes he has Als

As an update we took your advice got a new doctor went to a spine specialist they did a xray but didnt find anything. They couldn't explain the neck or back weakness due to our poor insurance standards we cant get anothervemg or see a neurologist until December. He is still having shortness of breath just recently looking on the internet we found axial onset of ALS and thinking that seems more like his symptoms than others. As I explained we did have one emg and they tested C5-C8 or T1 and L2-L5 and S1-2 but he is concerned about the areas that they didnt do because he is having twitching all over his body and his neck weakness is making it hard for him to breathe normally and his back weakness makes it hard for him to stand up for long periods of time and says I could easily push him over. He has no babinski signs no hoffman or clonus signs.
BellaBells is offline  
Old 10-09-2018, 03:21 PM #35 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,417
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,417
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: My husband believes he has Als

You just are not describing ALS, but you are scaring yourself and your husband silly that's for sure.
affected is offline  
Old 10-09-2018, 04:48 PM #36 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,101
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,101
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: My husband believes he has Als

Has he had a pulmonary function test to assess his breathing? Is he overweight?
KimT is offline  
Old 10-09-2018, 05:05 PM #37 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,981
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,981
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: My husband believes he has Als

We really don't think he has ALS. As Kim says, breathing trumps all, so going back to the internist, who may want to refer to a pulmonologist for lung function testing/a sleep study, is the best thing. Weakness and wobbliness and the weird voice on waking that you described can all relate to a sleep disorder like sleep apnea.

It is not true that the EMG done in several locations would miss ALS. It doesn't work like that.
lgelb is offline  
Old 10-09-2018, 05:40 PM #38 (permalink)
BellaBells's Avatar
New Member
 
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
BellaBells BellaBells is offline
New Member
BellaBells's Avatar
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
Default Re: My husband believes he has Als

No he isn't overweight the thing is when his vitals are checked they appear normal. But his breathing his loud through his nose and when he sleeps he breathes through his mouth.
Consultation at Hopkins
BellaBells is offline  
Old 10-09-2018, 06:31 PM #39 (permalink)
Member
 
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 364
codyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the rough
codyclan codyclan is online now
Member
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 364
codyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the roughcodyclan is a jewel in the rough
Default Re: My husband believes he has Als

So the part of that thread where they said diagnosis was largely based on EMG finding you have chosen to ignore, but you’ve cherrypicked some other symptoms? Look, this thread has gone on for 3 pages. You have said that you have inadequate insurance but he has been examined by specialists and they have ruled out ALS. Time to look elsewhere, you are doing your family a disservice by focusing on a disease he doesn’t have.

All the best,
T
codyclan is online now  
Old 10-09-2018, 06:46 PM #40 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,101
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,101
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: My husband believes he has Als

If I were him, I'd get a sleep study and pulmonary function test.
KimT is offline  
Old 10-09-2018, 06:55 PM #41 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,958
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,958
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: My husband believes he has Als

Bella, I refer you back to post #20 in this thread My husband believes he has Als to remind you that this forum does not take the place of proper medical care and to also remind you that the people here have continued to answer you with a great deal of patience and kindness, despite it still not looking like ALS.

The people here are not the ones you need to convince of anything, nor can they diagnose your husband with ALS or provide anything meaningful that they haven't already. You have received detailed answers by those experienced with ALS- some of whom are medical professionals. NO ONE has stated it is ALS or sounds like MND. Is there a purpose to your continuing to post here despite being told "No ALS" on multiple occasions?

Your husband needs to continue seeing a doctor. Straight up, you are wasting your time, and the time of others, continuing to post on an ALS forum and researching every single thread here. The normal response to being told by multiple experienced people they don't see ALS in your husband's reported symptoms would be relief and a profound thanks to the people who spent so much time and energy on giving you their answers.
ShiftKicker is offline  
Thanks from
affected (10-10-2018)
Old 11-02-2018, 01:58 PM #42 (permalink)
BellaBells's Avatar
New Member
 
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
BellaBells BellaBells is offline
New Member
BellaBells's Avatar
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
Default Re: My husband believes he has Als

My husband's breathing has gotten severely bad he is steady gaining weight at 227. We took your advise He had a breathing test oxygen 98 and the pulometer function test was 35 which is really bad. His neck feels a lot softer and he feels weaker but he can still lay on his back no problem
BellaBells is offline  
Old 11-02-2018, 02:09 PM #43 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,958
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,958
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: My husband believes he has Als

Bella, what do the doctors say? What have they recommended? What treatments are they considering? Have they stated you have reason to be looking at neurological reasons? What is the next step in your husband's treatment? Does it involve a neurology appointment?
ShiftKicker is offline  
Thanks from
BellaBells (11-02-2018)
Old 11-02-2018, 02:24 PM #44 (permalink)
BellaBells's Avatar
New Member
 
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
BellaBells BellaBells is offline
New Member
BellaBells's Avatar
Join Date: 2018
City: Dallas
State: Texas
Country: Dal
Interest: I am interested in learning about ALS/MND.
Posts: 27
BellaBells is on a distinguished road
Default Re: My husband believes he has Als

Yes the doctor has said the best thing to do is see a neurologist but the appointment is not until December we have been waiting for a couple of months now.

His breathing is getting worse though and his neck is so soft he says he fears it might drop or fall off. The doctor has prescribed two inhalers one with steroids and one for use as needed. Unfortunately Dr. Abdul is a family doctor and doesn't know much about serious illnesses he wont even check my husband's reflexes.

This has been going on for 7 months and it's just me and him and our two kids we have no help. He says he feels very weak and kind of like a rag doll and he cant do stuff like he could before. He is gaining weight around the midsection but his fingers and other areas seem smaller. He is also getting very sensitive to the cold which is very unlike him seeing as cold has never bother him. I know because he used to go out in 17 degree weather and not even complain but now even 60 degrees bothers him

Last edited by ShiftKicker : 11-02-2018 at 02:41 PM Reason: para
BellaBells is offline  
Old 11-02-2018, 02:39 PM #45 (permalink)
dldugan's Avatar
Member
 
Join Date: 2018
City: Lafayette
State: Indiana
Country: US
Diagnosed: 09/2018
Interest: I have been diagnosed with ALS.
Posts: 178
dldugan is on a very distinguished roaddldugan is on a very distinguished road
dldugan dldugan is offline
Member
dldugan's Avatar
Join Date: 2018
City: Lafayette
State: Indiana
Country: US
Diagnosed: 09/2018
Interest: I have been diagnosed with ALS.
Posts: 178
dldugan is on a very distinguished roaddldugan is on a very distinguished road
Default Re: My husband believes he has Als

Bella, There are a lot of neurologists and neurology related clinics in the Dallas area. You may be able to get an earlier appointment if you contact them personally and explain what is going on.
dldugan is offline  
Closed Thread

Tags
als, back, death, eating, falling, fear, hearing, hope, lift, love, mri, muscle, muscles, neurologist, pain, problem, reflex, shortness of breath, spasms, support, symptoms, test, testing, tongue, vision


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
My husband is gone Bexlil In Memoriam/In Memory of 18 03-09-2017 09:05 PM
My husband wants to die, FayRay Current Caregivers (CALS) 21 02-21-2017 12:42 AM
Does my husband have ALS LadyBuckeye Do I Have ALS? Is This ALS? 5 07-12-2016 08:20 PM
My husband lands In Memoriam/In Memory of 21 02-13-2016 02:29 PM
Neuro Still Believes It's PLS Zaphoon General Discussion About ALS/MND 13 06-24-2009 05:04 PM


All times are GMT -5. The time now is 06:46 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016