4tloml
Senior member
- Joined
- Sep 15, 2014
- Messages
- 578
- Reason
- CALS
- Diagnosis
- 04/2013
- Country
- US
- State
- CA
- City
- Suburban
Asking for questions to ask doctors…
I posted on your DIHALS re my husband several days ago after his 3rd neurologist referred him back for an EMG with the director of our ALS clinic. (First neurologist diagnosed bulbar-onset ALS in April 2013, sent him for EMG and 2nd opinion with ALS clinic director who said EMG didn’t “look quite like ALS” and sent him to 3rd neurologist, a movement disorder specialist who thought it might be Multiple System Atrophy. She's the one now sending him back because although he has the bulbar symptoms of MSA, he's not developing the hallmark orthostatic hypotension, bladder or other autonomic nervous system problems. Instead, he continues to have fasciculations and now atrophy--not symptoms of MSA but of ALS.)
I’m posting here, because as my husband’s symptoms develop, my sense is the first doctor got it right, and so I’m trying to prepare for his 2nd appointment with the ALS clinic neurologist. It’s time to, as Tillie called it, “name ‘The Monster’” just so we know what we’re dealing with. I guess I’m the type who wants to look it in the eye. I’m hoping that by listing his symptoms here and the tests run to date, you who have traveled this first part of the journey might recommend questions to ask or further testing to request to rule in or rule out. His appointment isn’t until Nov. 6th—feels like a long way off, but at least we’ll be traveling a bit. He has 2 business trips, and I accompany him now because, frankly, I’m afraid of him choking when he’s by himself.
Symptom History:
1st two symptoms—tremor in right hand, very shortly after, noticed slurring speech. Dysarthria has steadily progressed over 1 ½ years. Struggles to be understood.
Dysphagia started a little over a year ago. Has to keep chin down to keep from choking on liquids, still does several times a day. Never has liquid with food to avoid aspiration. Great difficulty eating—can’t move food around with tongue. Tongue and throat feel fatigued with eating/speaking.
Shortness of breath--has to take biggest breath he can to try to finish a sentence and sometimes feels out of breath for no apparent reason, just sitting in his chair.
Emotional lability—taking Neudexta, which helps some.
Hiccups—every day.
Fasciculations—1st neurologist showed me the fasciculations in his tongue. Can see them in his arms and legs {they really go crazy after he works out), but at other times (in the night) can feel them in his hands, chest, back, side.
Muscle atrophy—3rd neurologist noticed this and prompted referral back to ALS doctor. Atrophy came on very quickly in right hand and arm. He’s a pretty big guy with large upper body (58” chest) and I noticed last night his upper back was looking “lopsided.” I think the muscles of his shoulder/right upper back are beginning to atrophy as well. He said that several months ago his hand started feeling awkward when he signed his name and now he says he’s losing his grip in that hand.
Stiffness—he said his legs are feeling increasingly stiff. It’s very obvious watching him go up and down stairs. We used to hike miles together. A few weeks ago we couldn’t get down a set of stairs and ½ mile down the beach.
He’s continued to work out, not to increase, but just try to maintain level of fitness. We were out of town for 4 days and he said he felt like he lost fitness in that time—thought it was just a few days away from workouts, but “it’s not coming back.” (His words—I have to notice everything or dig for information. He either doesn’t notice or just ignores. Denial has always been his primary coping mechanism—HE will tell you that! And actually, not a bad one to have. It’s kinda working for him right now.
)
What others have mentioned:
Besides speech and eating difficulty (pretty much all our family and friends notice that), our 26-yr.-old son having lunch with him mentioned he seemed to get fatigued just feeding himself several weeks ago—getting food on the spoon, spoon to mouth—hand began trembling again. Just before the doctor noticed the atrophy, a friend who was in the passenger seat while he was driving mentioned it looked like he was having trouble driving, especially turning corners/handling the steering wheel seemed awkward.
Tests He Has Had:
• MRI—July, 2013, Nothing indicated
• EMG—July, 2013, Didn’t look “quite like ALS,” did show some peripheral neuropathy
• LABS—July, 2013, No Myasthenia Gravis, No Kennedy’s/SMA, Metabolic Panel OK, Copper & Iron OK, No overt evidence of a monoclonal protein, CK was OK.
• Swallow Study—Feb., 2014--ENT noted a vocal chord tremor, thought possibly dystonia because of tightness in tongue, throat and chest. To repeat study Feb. 2015.
• Sleep Study—Nov. 2013—Complex sleep apnea, ~35 episodes/hour. REM Behavior Disorder. Now using “BIPAP autoSV Advanced” by Respironics. Down to ~ 5 episodes/hour.
I’m sorry so lengthy—wanted to put it all out there. But if you’ve been kind enough to read this far, what are your recommendations for us on Nov. 6th? Is there something you asked or wished you’d asked that you found or would’ve found helpful at this stage?
I so appreciate any guidance here. You guys are awesome (male/female inclusive). Any comic relief welcome, too, perhaps from you Bad Boys. You know who you are…and so does anyone else who’s been cruising these threads!
I want to take care of my guy. He truly is The Love of My Life and I want him with me every second I can have him!
I posted on your DIHALS re my husband several days ago after his 3rd neurologist referred him back for an EMG with the director of our ALS clinic. (First neurologist diagnosed bulbar-onset ALS in April 2013, sent him for EMG and 2nd opinion with ALS clinic director who said EMG didn’t “look quite like ALS” and sent him to 3rd neurologist, a movement disorder specialist who thought it might be Multiple System Atrophy. She's the one now sending him back because although he has the bulbar symptoms of MSA, he's not developing the hallmark orthostatic hypotension, bladder or other autonomic nervous system problems. Instead, he continues to have fasciculations and now atrophy--not symptoms of MSA but of ALS.)
I’m posting here, because as my husband’s symptoms develop, my sense is the first doctor got it right, and so I’m trying to prepare for his 2nd appointment with the ALS clinic neurologist. It’s time to, as Tillie called it, “name ‘The Monster’” just so we know what we’re dealing with. I guess I’m the type who wants to look it in the eye. I’m hoping that by listing his symptoms here and the tests run to date, you who have traveled this first part of the journey might recommend questions to ask or further testing to request to rule in or rule out. His appointment isn’t until Nov. 6th—feels like a long way off, but at least we’ll be traveling a bit. He has 2 business trips, and I accompany him now because, frankly, I’m afraid of him choking when he’s by himself.
Symptom History:
1st two symptoms—tremor in right hand, very shortly after, noticed slurring speech. Dysarthria has steadily progressed over 1 ½ years. Struggles to be understood.
Dysphagia started a little over a year ago. Has to keep chin down to keep from choking on liquids, still does several times a day. Never has liquid with food to avoid aspiration. Great difficulty eating—can’t move food around with tongue. Tongue and throat feel fatigued with eating/speaking.
Shortness of breath--has to take biggest breath he can to try to finish a sentence and sometimes feels out of breath for no apparent reason, just sitting in his chair.
Emotional lability—taking Neudexta, which helps some.
Hiccups—every day.
Fasciculations—1st neurologist showed me the fasciculations in his tongue. Can see them in his arms and legs {they really go crazy after he works out), but at other times (in the night) can feel them in his hands, chest, back, side.
Muscle atrophy—3rd neurologist noticed this and prompted referral back to ALS doctor. Atrophy came on very quickly in right hand and arm. He’s a pretty big guy with large upper body (58” chest) and I noticed last night his upper back was looking “lopsided.” I think the muscles of his shoulder/right upper back are beginning to atrophy as well. He said that several months ago his hand started feeling awkward when he signed his name and now he says he’s losing his grip in that hand.
Stiffness—he said his legs are feeling increasingly stiff. It’s very obvious watching him go up and down stairs. We used to hike miles together. A few weeks ago we couldn’t get down a set of stairs and ½ mile down the beach.
He’s continued to work out, not to increase, but just try to maintain level of fitness. We were out of town for 4 days and he said he felt like he lost fitness in that time—thought it was just a few days away from workouts, but “it’s not coming back.” (His words—I have to notice everything or dig for information. He either doesn’t notice or just ignores. Denial has always been his primary coping mechanism—HE will tell you that! And actually, not a bad one to have. It’s kinda working for him right now.
)What others have mentioned:
Besides speech and eating difficulty (pretty much all our family and friends notice that), our 26-yr.-old son having lunch with him mentioned he seemed to get fatigued just feeding himself several weeks ago—getting food on the spoon, spoon to mouth—hand began trembling again. Just before the doctor noticed the atrophy, a friend who was in the passenger seat while he was driving mentioned it looked like he was having trouble driving, especially turning corners/handling the steering wheel seemed awkward.
Tests He Has Had:
• MRI—July, 2013, Nothing indicated
• EMG—July, 2013, Didn’t look “quite like ALS,” did show some peripheral neuropathy
• LABS—July, 2013, No Myasthenia Gravis, No Kennedy’s/SMA, Metabolic Panel OK, Copper & Iron OK, No overt evidence of a monoclonal protein, CK was OK.
• Swallow Study—Feb., 2014--ENT noted a vocal chord tremor, thought possibly dystonia because of tightness in tongue, throat and chest. To repeat study Feb. 2015.
• Sleep Study—Nov. 2013—Complex sleep apnea, ~35 episodes/hour. REM Behavior Disorder. Now using “BIPAP autoSV Advanced” by Respironics. Down to ~ 5 episodes/hour.
I’m sorry so lengthy—wanted to put it all out there. But if you’ve been kind enough to read this far, what are your recommendations for us on Nov. 6th? Is there something you asked or wished you’d asked that you found or would’ve found helpful at this stage?
I so appreciate any guidance here. You guys are awesome (male/female inclusive). Any comic relief welcome, too, perhaps from you Bad Boys. You know who you are…and so does anyone else who’s been cruising these threads!
I want to take care of my guy. He truly is The Love of My Life and I want him with me every second I can have him!
