Status
Not open for further replies.

Bobby888

New member
Joined
Nov 3, 2017
Messages
9
Reason
Loved one DX
Country
CA
State
Ontario
City
Oakville
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 don’t 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 didn’t seem to be really effected.

I’m 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 haven’t got much sleep lately worrying and hoping to get some answers from someone since we have been waiting what feels like forever.

Regards
 

Bobby888

New member
Joined
Nov 3, 2017
Messages
9
Reason
Loved one DX
Country
CA
State
Ontario
City
Oakville
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.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
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.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,362
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
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:

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,026
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
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?
 

Bobby888

New member
Joined
Nov 3, 2017
Messages
9
Reason
Loved one DX
Country
CA
State
Ontario
City
Oakville
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 didn’t want to commit to that diagnosis. She just said she has some reasons to believe it’s 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. I’m 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.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
568
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
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:

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,026
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
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
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
568
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Bobby I tried the email address you gave me and it was undeliverable
Al
 
Last edited:
Status
Not open for further replies.
Top