Old 11-03-2017, 10:24 PM #1 (permalink)
Bobby888's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Oakville
State: Ontario
Country: CA
Interest: I am a family member of someone with ALS/MND.
Posts: 3
Bobby888 is on a distinguished road
Bobby888 Bobby888 is offline
New Member (Say Hi)
Bobby888's Avatar
Join Date: 2017
City: Oakville
State: Ontario
Country: CA
Interest: I am a family member of someone with ALS/MND.
Posts: 3
Bobby888 is on a distinguished road
Default Please help does my father have ALS

I was wondering if someone knowledgeable would be able to help me with some concerns regarding my fathers condition. He has been tested for over a year now and we still donít have a final diagnosis but doctor seems to be leaning towards ALS. My father was diagnosed with Ocular melanoma 13 years ago and his eye was removed. 2 1/2 years ago that cancer returned and was found in his liver. The doctors performed a liver resection which has been successful. Shortly after my fathers surgery he started to lose weight from 175 lbs to 150 lbs. His breathing started to become more difficult and he began to get weaker. Over the last year these symptoms have progressed and he is having trouble walking for long distances. He has lost more weight and is now 133 Lbs and having trouble speaking because his voice is very faint. 3 months ago my father over worked his body and hat night I noticed he started to talk with a slur. I was very concerned but the slur went away. The slurred speech is back now and his communication is getting worse by the week. At night his speech is much worse than when he wakes in the morning.

Today the doctors performed an EMG and said there were abnormalities that suggest ALS but also said there are things that point to MYasthenia Gravis. He sleeps with his eyes partly open and his one eye droops when he is tired.

So far my father has lost a lot of weight is getting weaker and has lost most of his muscles. He has recently started feeling twitching and muscle cramps. He has a really hard time with his breathing and uses a Cpap machine which gives him major headaches every morning when he wakes. He is having trouble swallowing and is now on a mostly liquid diet. The doctor today mentioned his tongue didnít seem to be really effected.

Iím just wondering if this could be MG and not ALS or if this looks or sounds more like ALS would be the prognosis. He does have more symptoms when he is stressed or when he has tests coming up and I find his speech can be very weak and slurred one night and the next morning he seems a little better.

Sorry for rambling I havenít got much sleep lately worrying and hoping to get some answers from someone since we have been waiting what feels like forever.

Regards
Bobby888 is offline  
Old 11-03-2017, 10:30 PM #2 (permalink)
Bobby888's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Oakville
State: Ontario
Country: CA
Interest: I am a family member of someone with ALS/MND.
Posts: 3
Bobby888 is on a distinguished road
Bobby888 Bobby888 is offline
New Member (Say Hi)
Bobby888's Avatar
Join Date: 2017
City: Oakville
State: Ontario
Country: CA
Interest: I am a family member of someone with ALS/MND.
Posts: 3
Bobby888 is on a distinguished road
Default Re: Please help does my father have ALS

Also my father has a heart flutter and has taken some medication for that. We will be going to get my father a Bipap machine for his sleeping because he really hasn’t slept much in over a month. Well at least not quality sleep. Every time he sits down he starts to doze off and then his breathing wakes himself up.
Bobby888 is offline  
Old 11-03-2017, 11:03 PM #3 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,389
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,389
GregK has disabled reputation
Default Re: Please help does my father have ALS

1) he'd possibly do better with a BiPAP versus the CPAP. Morning headaches are often a sign of CO2 retention, as is lethargy during the day.
2) losing weight and eating difficulty could indicate that a feeding tube is needed. I have one and it's also invaluable for hydration and medicine.
3) As to MG vs ALS, you'll have to trust the Dr, we don't diagnose and they have his records.

Blood CO2 can easily be tested with a simple serum test or a slightly less simple Arterial Blood Gas.
GregK is offline  
Old 11-04-2017, 01:20 AM #4 (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: 4,925
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: 4,925
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: Please help does my father have ALS

There are pretty definitive tests for MG and the features/course you describe does fit MG in some respects seemingly better than ALS. But there are also many other possibilities.

This guy doesn't sound like a neuromuscular specialist so I'd find one, at an academic medical center. Your dad deserves a definitive diagnosis after more than a year.

Best,
Laurie

Last edited by lgelb : 11-05-2017 at 03:59 PM Reason: corrected geography
lgelb is offline  
Old 11-04-2017, 02:05 AM #5 (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: 1,137
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
♥ 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: 1,137
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
Default Re: Please help does my father have ALS

Bobby- Is your Dad a patient at Sunnybrook? Has your dad been referred to an ALS clinic in Ontario? It sounds like he needs to be under the care of a neuromuscular specialist familiar with MND. Are the neuros who have seen your dad operating with any sense of urgency? If it's MG, the treatment is IVIG- has this been offered?
ShiftKicker is offline  
Old 11-04-2017, 02:19 AM #6 (permalink)
Bobby888's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Oakville
State: Ontario
Country: CA
Interest: I am a family member of someone with ALS/MND.
Posts: 3
Bobby888 is on a distinguished road
Bobby888 Bobby888 is offline
New Member (Say Hi)
Bobby888's Avatar
Join Date: 2017
City: Oakville
State: Ontario
Country: CA
Interest: I am a family member of someone with ALS/MND.
Posts: 3
Bobby888 is on a distinguished road
Default Re: Please help does my father have ALS

Yes my father goes to sunny brook on the 7th of November. There has been no sense of urgency unfortunately and he seems to be getting worse. He spoke to a Neuro today at Western hospital in Toronto and she seemed to be leaning more towards ALS but didnít want to commit to that diagnosis. She just said she has some reasons to believe itís MG based on the fact that his speech progressively gets worse as the day goes on but that could be also due to his exhaustion. But she also mentioned that the EMG showed signs of ALS more than MG if that makes any sense. She has also asked that he get a MRI of his spine. Iím just worried that something will happen to him before we get an actual diagnosis because he continues to get weaker and continues to lose weight. I also noticed that he seems to breathe worse when he is stressed and gets extremely anxious when performing any test.
Bobby888 is offline  
Old 11-04-2017, 10:13 AM #7 (permalink)
Firefighter58's Avatar
Member
 
Join Date: 2016
City: Oakville
State: Ontario
Country: CA
Diagnosed: 05/2014
Interest: I have been diagnosed with ALS.
Posts: 409
Firefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really nice
Firefighter58 Firefighter58 is offline
Member
Firefighter58's Avatar
Join Date: 2016
City: Oakville
State: Ontario
Country: CA
Diagnosed: 05/2014
Interest: I have been diagnosed with ALS.
Posts: 409
Firefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really nice
Default Re: Please help does my father have ALS

Hello Bobby, I can not add much more than my friends above have already said. Sunnybrook, is a wonderful clinic, I attend McMaster in Hamilton but I believe that thay operate in conjunction with Each other. That being said I receive excellent care at McMaster,If your dad needs some one to text with or advise I am not far away. I agree with Greg on the feeding tube, it certainly helped me.
Al

Last edited by Firefighter58 : 11-04-2017 at 11:36 AM
Firefighter58 is offline  
Old 11-04-2017, 01:28 PM #8 (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: 1,137
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
♥ 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: 1,137
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
Default Re: Please help does my father have ALS

Bobby- The fact that your dad has an appointment so soon tells me they are treating it with quite a bit of urgency. If it was not being treated as such, it's likely he'd be looking at an appointment in the New Year some time. I wish you well and hope your dad receives the answers he needs from Sunnybrook at his appointment in a few days.

Best
ShiftKicker is offline  
Old 11-05-2017, 10:03 AM #9 (permalink)
Firefighter58's Avatar
Member
 
Join Date: 2016
City: Oakville
State: Ontario
Country: CA
Diagnosed: 05/2014
Interest: I have been diagnosed with ALS.
Posts: 409
Firefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really nice
Firefighter58 Firefighter58 is offline
Member
Firefighter58's Avatar
Join Date: 2016
City: Oakville
State: Ontario
Country: CA
Diagnosed: 05/2014
Interest: I have been diagnosed with ALS.
Posts: 409
Firefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really niceFirefighter58 is just really nice
Default Re: Please help does my father have ALS

Bobby I tried the email address you gave me and it was undeliverable
Al

Last edited by Firefighter58 : 11-05-2017 at 11:12 AM
Firefighter58 is offline  
Closed Thread

Tags
als, back, breathing, communication, cpap, cramps, diagnosed, diagnosis, diet, emg, eye, father, myasthenia gravis, night, please help, slurred speech, speech, surgery, swallowing, symptoms, tests, tongue, trouble swallowing, twitching, voice


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
Father with ALS xprecious05x General Discussion About ALS/MND 2 12-09-2010 06:32 PM
Trying to help my father... kjthacker Current Caregivers (CALS) 3 06-13-2009 04:41 PM
Father with mnd - do I have it? rnl63 Do I Have ALS? Is This ALS? 2 02-01-2008 11:43 AM
New here, father has ALS beachbaby Current Caregivers (CALS) 4 10-26-2007 11:41 PM
HI I'm new my father-in-law has ALS loreleibesso Welcome New Members - Say Hello 8 08-10-2007 09:01 AM


All times are GMT -5. The time now is 01:06 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